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Dec 9, 2025

ASIF Council Meeting 2026

  We are excited to announce the 2026 ASIF Council Meeting in Athens, Greece in 2026. We hope to welcome more of our members than ever before, making this an unmissable event! Please save the date and make plans to join us in Greece. Since 1988, ASIF has held a Council Meeting every two to … Continue reading "ASIF Council Meeting 2026"...

read more

Dec 8, 2025

World Patient Alliance

ASIF has become a member of the World Patients Alliance (WPA). WPA is the leading umbrella network of patient organisations worldwide, representing more than 460 member groups across 124 countries. Its mission is to act as the global voice of patients, promoting patient empowerment, meaningful engagement, and access to safe, high-quality, and affordable health care … Continue reading "World Patient Allianc...

read more

Dec 4, 2025

AI and how it can benefit patient organisations

We use AI every day in our personal lives – in our satnav in the car, our TV and music platforms, predictive text when writing messages etc – and many of us have started to use it in our professional lives as well. AI is well and truly here and can have huge benefits for … Continue reading "AI and how it can benefit patient organisations"...

read more

Dec 3, 2025

TikTok and axSpA: How Accurate Is the Information?

Findings from new research presented at ACR Convergence 2025 Social media is a powerful tool for raising awareness and connecting people living with axSpA. But how reliable is the information we see online? A new study presented at the American College of Rheumatology (ACR) Convergence 2025, titled “Quality and Accuracy of TikTok Videos on Axial … Continue reading "TikTok and axSpA: How Accurate...

read more

Dec 3, 2025

Working Together Creates Greater Opportunities

  ASIF is proud to be a member of both the Global Alliance for Patient Access (GAfPA) and the Global Remission Coalition (GRC). ASIF Trustees, Lillann Wermskog (Spafo Norway), Andri Phoka (CYLPER, Cyprus) and Prachee Bhosole (ASWS, India), alongside other members of ASIF and our Communications Manager, Jo de Bry, attended a GRC meeting in … Continue reading "Working Together Creates Greater Oppo...

read more

Dec 3, 2025

IAPO’s 11th Global Patients’ Congress: Driving Patient Voices into Action

  “From Voices to Action: Patient Organisations Shaping Health System Transformation,” was the theme of the International Alliance of Patient Organisations’ 11th Global Patients’ Congress in Manila, Philippines. The event focused on how patient organisations can move beyond being consulted to becoming active partners in shaping health policies, services, and system reforms.   New Trustee, … Continue reading...

read more

Dec 3, 2025

Connecting Communities: Inside EULAR PARE and Its Global Impact

  When it comes to shaping the future of rheumatology advocacy, few organisations have as wide-reaching an influence as EULAR – the European Alliance of Associations for Rheumatology. Representing people with rheumatic and musculoskeletal diseases (RMDs), health professionals, rheumatologists, researchers, and scientific societies across Europe, EULAR is a hub for collaboration, education, and innovation. At … Continue...

read more

Dec 3, 2025

Axial Spondyloarthritis Playbook: Reducing Time to Diagnosis and Improving Patient Experience

Written by Jill Hamilton, Head of Policy & Health Services at NASS Background In 2021, the National Axial Spondyloarthritis Society (NASS) (UK), launched the Act on Axial SpA campaign to tackle one of the greatest challenges in axial spondyloarthritis (axial SpA*): the delay in diagnosis. While this is a critical issue in the UK, delayed … Continue reading "Axial Spondyloarthritis Playbook: R...

read more

Dec 2, 2025

Introducing our newest member: 3majmy się razem – Poland

Written by Viola Zajk Founded in 2008, 3majmy się razem (“Let’s stick together”) is a patient organisation in Poland that unites people living with inflammatory connective tissue diseases, axSpA, and other chronic rheumatic conditions.   In 2026 we will celebrate our 18th anniversary – eighteen years of shared challenges, learning, and deep human connection. Our … Continue reading...

read more

Dec 2, 2025

IMAP: ASIF’s Pioneering Global Project to Map axSpA and Psoriatic Arthritis

We are excited to share more about the International Map of Axial Spondyloarthritis and Psoriatic Arthritis (IMAP)- a new ASIF initiative that builds on the success of IMAS (International Map of Axial Spondyloarthritis). Why IMAP? IMAS was a landmark study that surveyed over 5,500 patients in 27 countries, providing unprecedented insights into the burden of … Continue reading "IMAP: ASIF’s...

read more

Dec 2, 2025

New ASIF Trustees

Thank you to everyone who joined us for the online ASIF Annual Meeting and AGM on 15 October. It was a great opportunity to update our members and sponsors about our recent activities and plans for the future. Thank you also to our members for voting for the Trustees. I am delighted to welcome two … Continue reading "New ASIF Trustees"...

read more

Dec 2, 2025

World AS Day 2026: Save the Date

Save the Date: Saturday 2 May 2026 This year’s campaign will highlight the fact that axSpA is so much more than back pain. Many of us live with other syndromes alongside axSpA and the campaign aims to highlight this. As well as a library of social media assets, we will create a short video featuring … Continue reading "World AS Day 2026: Save the Date"...

read more

Sep 5, 2025

World Arthritis Day – 12 October 2025

  Webinar: Achieve Your Dreams Four EULAR Communities (EMEUNET, HPR, PARE, PAED) come together to share their dreams and visions. 15 October, 16:00-17:00 CEST.    Calling all ASIF Members The Global Remission Coalition are exploring the development of a video campaign for World Arthritis Day that features the lived experiences of people who have achieved remission. If … Continue reading...

read more

Sep 5, 2025

Go With Us

  Written by Julia Mani, Ai Arthritis “Go With Us” is a unique experience where patients and caregivers around the world can virtually join the AiArthritis team as we attend research conferences. This is a one-of-a-kind opportunity to connect to the latest research, communicate with those attending, and learn how this information ties into improving disease management. … Continue reading...

read more

Sep 5, 2025

Global Remission Coalition

ASIF is a founding member of the newly-launched Global Remission Coalition (GRC), a platform for remission stakeholders to collaborate, advocate, and elevate the narrative about the value of remission to the patient, health systems and society. Its founding members and leadership envision healthcare systems that prioritise the pursuit of remission in chronic inflammatory conditions so … Continue reading "G...

read more

Sep 5, 2025

Brazil’s 24th Medical-Social Meeting on Rheumatic Diseases

Looking back on our first year of participation in ASIF, we can now proudly say that we are truly part of a global community. We’ve gained visibility, found a strong network to rely on, and created a space where we can share our stories, draw strength and inspiration from one another, and grow together. Being … Continue reading "Brazil’s 24th Medical-Social Meeting on Rheumatic Diseases"...

read more

Sep 5, 2025

23.7 million people reached

This year’s World AS Day campaign reached approximately 23.7 million people worldwide on social media. In addition, many of our members held events, in person and virtual, raising awareness with an even greater number of people. The campaign targeted rheumatologists and other heathcare professionals (HCPs), people living with axSpA but without a diagnosis, those with … Continue reading "23.7 million...

read more

Aug 15, 2025

Spanish axSpA Webinar

The Spanish speaking axSpA community were invited to an informative and interactive webinar on 5 July. The event, held in commemoration of World AS Day was co-hosted by ASIF and ASOPAN the pan-American network of rheumatic patient associations.  The half-day webinar, held in commemoration of World AS Day, was streamed on Facebook and YouTube. Inspiring … Continue reading "Spanish axSpA Webinar...

read more

Jun 9, 2025

Global Remission Coalition

We are delighted to announce that ASIF has become one of the founding members of the Global Remission Coalition which was launched on 21 May 2025 on the side of the World Health Assembly in Geneva, Switzerland.  The Global Alliance for Patient Access (GafPA) has, over the past 18 months, convened a series of stakeholder … Continue reading "Global Remission Coalition"...

read more

Jun 9, 2025

AFLAR

Rheumatology: a New Dawn in Africa, but what about Advocacy? Being members of the EULAR IPARE Working Group, Franklin Hiagbe, Maranda van Dam and Dieter Wiek (pictured) attended the African League of Associations for Rheumatology (AFLAR) Congress in conjunction with the Cameroon College of Rheumatology from 10 – 12 April 2025 in Yaoundé, Cameroon. EULAR … Continue reading "AFLAR"...

read more

Jun 9, 2025

EULAR: Come and say hi!

Will you be at EULAR in Barcelona? If so please, come and say ‘hi’ at the ASIF Booth (O13). We will be raising awareness of axSpA, our work around the world and about our members. Did you participate in Lace up for axSpA? Wear your orange shoelaces to EULAR and help us raise awareness of … Continue reading "EULAR: Come and say hi!"...

read more

Jun 9, 2025

ELEANA

The Hellenic League Against Rheumatism (ELEANA) became a member of ASIF in 2022 and participated in its Council Meeting for the first time in Copenhagen. At that time, when asked to present axSpA-related activities to fellow ASIF members, we had little to report beyond our annual participation in World AS Day. This accurately reflected the … Continue reading "ELEANA"...

read more

Jun 6, 2025

ASIF Webinar: HCP Education

Our recent webinar brought together speakers from the UK, Canada, and South Africa, who exchanged ideas, shared successes, and discuss challenges in raising awareness with HCPs with the aim of reducing the delay in the diagnosis of axSpA. Attendees joined the webinar from Panama to Ireland, the Philippines to Germany and many countries in between. … Continue reading "ASIF Webinar: HCP Edu...

read more

Jun 2, 2025

Thanks for visiting us at EULAR and scanning the QR code!

What do you think? The 7.4-year global average delay to diagnosis in axSpA is unacceptable. A major barrier to getting an axSpA diagnosis is the lack of awareness among family doctors and other non-specialist HCPs.   Help us understand how we can change this by completing this three-minute survey. Complete the survey now!    Axial Spondyloarthritis … Continue reading "Thanks for visiting us...

read more

May 23, 2025

Wow! What a World AS Day!

Awareness was raised with millions of people this World AS Day. ASIF’s social media posts reached 16.5 million people alone. We know our members, partners and individuals raised huge amounts of awareness online and at face-to-face events so the number of people who learnt about axSpA is much higher! Thank you to everyone who raised … Continue reading "Wow! What a World AS Day!"...

read more

May 7, 2025

Webinar: HCP Education

  The global delay to diagnosis in axSpA is unacceptable.  One of the major barriers to getting a diagnosis is the lack of awareness and knowledge among primary care physicians and other healthcare professionals (HCPs).    So how do we change this? It’s not easy! We know that it can be challenging to connect with … Continue reading "Webinar: HCP Education"...

read more

Mar 22, 2025

World AS Day 2025

World AS Day takes place on Saturday 3 May 2025. This year the theme is ‘Lace up for axSpA’. The campaign highlights the everyday challenges of living with axSpA. Tying shoelaces is just one example of an ‘everyday challenge’ – the materials feature other tasks including drinking from a water bottle, checking traffic before crossing … Continue reading "World AS Day 2025"...

read more

Mar 22, 2025

The Pursuit of Remission and Improved Quality of Life in axSpA

Join the Global Alliance for Patient Access (GAfPA) and ASIF’s for a webinar highlighting the value of pursuing remission in rheumatic and musculoskeletal diseases. ASIF Trustees Nadia Malliou and Lillann Wermskog, and Jo Lowe, Project Manager at ASIF, will be talking to Neil Betteridge, Strategic Advisor for European Alliance for Patient Access, about axSpA, an … Continue reading "The Pursuit...

read more

Mar 22, 2025

ASAS Annual Meeting

Jo Davies and Jo Lowe were delighted to attend the ASAS annual meeting in January.  This year’s event marked 30 years of ASAS and was held in Maastricht, in the Netherlands where the organisation was founded in 1995.  It was a fitting way to commemorate the success and achievements of ASAS over the last three … Continue reading "ASAS Annual Meeting"...

read more

Mar 22, 2025

APMARR

Associazione Nazionale Persone con Malattie Reumatologiche e Rare (APMARR), celebrated its 40th anniversary last year. APMARR’s mission is “to improve the quality of assistance and to improve the quality of life” offering help and information to people with rheumatic and rare diseases through volunteering, psychological support, awareness campaigns. APMARR runs national and local activities throughout … Continue reading...

read more

Mar 22, 2025

ASIF Council Meeting Report

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Mar 22, 2025

New Expert Advisory Committee

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Mar 22, 2025

New Treasurer for ASIF

  We are delighted to welcome René Bräm as ASIF’s new Treasurer. Rene is the director of the Swiss Ankylosing Spondylitis Association and is a board member and trustee of national associations and foundations in Switzerland. René has supported ASIF since its foundation, when for many years he was the treasurer as well as working as … Continue reading "New Treasurer for ASIF"...

read more

Dec 18, 2024

Introducing our new Trustees

Following our recent call for new Trustees, we are delighted to announce the successful appointments. Please read more about it here....

read more

Dec 8, 2024

Making Access Happen

As we know, timely access to affordable and appropriate medications can significantly improve health outcomes and enhance quality of life. By expanding treatment options and promoting competition, generic and biosimilar medicines can improve access, sustainability of healthcare systems, and alleviate the societal burden of untreated illnesses. Patient organisations provide a powerful voice for patients and … Continue read...

read more

Dec 8, 2024

Focusing on Latin America

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Dec 8, 2024

Rheumacensus

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Dec 6, 2024

EULAR PARE Conference

The EULAR PARE Conference is an annual educational and networking event featuring a different topic each year and offering a high-quality programme for the RMD community with keynote speakers, debates and workshops spanning three days. Running from 28-30 November in Brussels, this year’s meeting focussed on the role of patients and patient representatives in rheumatology … Continue reading "EU...

read more

Dec 6, 2024

American College of Rheumatology

Annual American College of Rheumatology annual meeting (ACR Convergence) 2024 took place November 14–19 in Washington, D.C.ASIF used ACR to continue dissemination of the International Map of Axial Spondyloarthritis (IMAS) findings.  Drs Victoria Navarro-Compán and Denis Poddubnyy (pictured) from the IMAS Scientific Committee presented the poster on ‘Factors Associated with Pain Intensity in axSpA’. The … Continue reading...

read more

Dec 6, 2024

First Latin American Regional Meeting

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Dec 5, 2024

ASIF Council Meeting 2024: Member Posters

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Nov 25, 2024

New President for CEADE

It is with great enthusiasm that we inform you that after the CEADE General Assembly held in Cordoba on June 29th 2024, it was agreed that a new Board of Directors would assume the responsibility of the organisation. Marco Garrido, who already served on the Executive Board as liaison with ASIF, has been elected as the … Continue reading "New President for CEADE"...

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Nov 25, 2024

Bringing Together Patient Representatives at the ASIF Council Meeting

Perhaps the most important outcome from the meeting was the sharing of experiences and the strengthening of new and existing relationships. Running a patient organisation is incredibly rewarding but also hugely challenging. Knowing that the challenges faced are not unique and hearing how others have overcome them is incredibly powerful. Delegates heard a presentation on … Continue reading...

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Nov 23, 2024

Thank you

A message from Zhivko Yankov, President of ASIF “I would like to acknowledge two individuals who have played an essential role in ASIF’s journey: Raj Mahapatra and Maranda van Dam. Both have served ASIF with remarkable dedication and passion over the years, and their work has had a profound and lasting impact on the organisation. “Raj, your wisdom … Continue reading "Thank you"...

read more

Sep 7, 2024

Focusing on Latin America

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

May 31, 2024

ASIF Council Meeting 2024: Colombia

  ASIF members from around the world will gather in Columbia in October for our Council Meeting. We have registrations from all continents and expect this to be the biggest ever meeting of organisations supporting people living with axSpA. All participating organisations will have the opportunity to present a poster and there will be plenty … Continue reading "ASIF Council Meeting 202...

read more

Dec 9, 2025

ASIF Council Meeting 2026

  We are excited to announce the 2026 ASIF Council Meeting in Athens, Greece in 2026. We hope to welcome more of our members than ever before, making this an unmissable event! Please save the date and make plans to join us in Greece. Since 1988, ASIF has held a Council Meeting every two to … Continue reading "ASIF Council Meeting 2026"...

read more

Dec 8, 2025

World Patient Alliance

ASIF has become a member of the World Patients Alliance (WPA). WPA is the leading umbrella network of patient organisations worldwide, representing more than 460 member groups across 124 countries. Its mission is to act as the global voice of patients, promoting patient empowerment, meaningful engagement, and access to safe, high-quality, and affordable health care … Continue reading "World Patient Allianc...

read more

Dec 4, 2025

AI and how it can benefit patient organisations

We use AI every day in our personal lives – in our satnav in the car, our TV and music platforms, predictive text when writing messages etc – and many of us have started to use it in our professional lives as well. AI is well and truly here and can have huge benefits for … Continue reading "AI and how it can benefit patient organisations"...

read more

Dec 3, 2025

TikTok and axSpA: How Accurate Is the Information?

Findings from new research presented at ACR Convergence 2025 Social media is a powerful tool for raising awareness and connecting people living with axSpA. But how reliable is the information we see online? A new study presented at the American College of Rheumatology (ACR) Convergence 2025, titled “Quality and Accuracy of TikTok Videos on Axial … Continue reading "TikTok and axSpA: How Accurate...

read more

Dec 3, 2025

Working Together Creates Greater Opportunities

  ASIF is proud to be a member of both the Global Alliance for Patient Access (GAfPA) and the Global Remission Coalition (GRC). ASIF Trustees, Lillann Wermskog (Spafo Norway), Andri Phoka (CYLPER, Cyprus) and Prachee Bhosole (ASWS, India), alongside other members of ASIF and our Communications Manager, Jo de Bry, attended a GRC meeting in … Continue reading "Working Together Creates Greater Oppo...

read more

Dec 3, 2025

IAPO’s 11th Global Patients’ Congress: Driving Patient Voices into Action

  “From Voices to Action: Patient Organisations Shaping Health System Transformation,” was the theme of the International Alliance of Patient Organisations’ 11th Global Patients’ Congress in Manila, Philippines. The event focused on how patient organisations can move beyond being consulted to becoming active partners in shaping health policies, services, and system reforms.   New Trustee, … Continue reading...

read more

Dec 3, 2025

Connecting Communities: Inside EULAR PARE and Its Global Impact

  When it comes to shaping the future of rheumatology advocacy, few organisations have as wide-reaching an influence as EULAR – the European Alliance of Associations for Rheumatology. Representing people with rheumatic and musculoskeletal diseases (RMDs), health professionals, rheumatologists, researchers, and scientific societies across Europe, EULAR is a hub for collaboration, education, and innovation. At … Continue...

read more

Dec 3, 2025

Axial Spondyloarthritis Playbook: Reducing Time to Diagnosis and Improving Patient Experience

Written by Jill Hamilton, Head of Policy & Health Services at NASS Background In 2021, the National Axial Spondyloarthritis Society (NASS) (UK), launched the Act on Axial SpA campaign to tackle one of the greatest challenges in axial spondyloarthritis (axial SpA*): the delay in diagnosis. While this is a critical issue in the UK, delayed … Continue reading "Axial Spondyloarthritis Playbook: R...

read more

Dec 2, 2025

Introducing our newest member: 3majmy się razem – Poland

Written by Viola Zajk Founded in 2008, 3majmy się razem (“Let’s stick together”) is a patient organisation in Poland that unites people living with inflammatory connective tissue diseases, axSpA, and other chronic rheumatic conditions.   In 2026 we will celebrate our 18th anniversary – eighteen years of shared challenges, learning, and deep human connection. Our … Continue reading...

read more

Dec 2, 2025

IMAP: ASIF’s Pioneering Global Project to Map axSpA and Psoriatic Arthritis

We are excited to share more about the International Map of Axial Spondyloarthritis and Psoriatic Arthritis (IMAP)- a new ASIF initiative that builds on the success of IMAS (International Map of Axial Spondyloarthritis). Why IMAP? IMAS was a landmark study that surveyed over 5,500 patients in 27 countries, providing unprecedented insights into the burden of … Continue reading "IMAP: ASIF’s...

read more

Dec 2, 2025

New ASIF Trustees

Thank you to everyone who joined us for the online ASIF Annual Meeting and AGM on 15 October. It was a great opportunity to update our members and sponsors about our recent activities and plans for the future. Thank you also to our members for voting for the Trustees. I am delighted to welcome two … Continue reading "New ASIF Trustees"...

read more

Dec 2, 2025

World AS Day 2026: Save the Date

Save the Date: Saturday 2 May 2026 This year’s campaign will highlight the fact that axSpA is so much more than back pain. Many of us live with other syndromes alongside axSpA and the campaign aims to highlight this. As well as a library of social media assets, we will create a short video featuring … Continue reading "World AS Day 2026: Save the Date"...

read more

Sep 5, 2025

World Arthritis Day – 12 October 2025

  Webinar: Achieve Your Dreams Four EULAR Communities (EMEUNET, HPR, PARE, PAED) come together to share their dreams and visions. 15 October, 16:00-17:00 CEST.    Calling all ASIF Members The Global Remission Coalition are exploring the development of a video campaign for World Arthritis Day that features the lived experiences of people who have achieved remission. If … Continue reading...

read more

Sep 5, 2025

Go With Us

  Written by Julia Mani, Ai Arthritis “Go With Us” is a unique experience where patients and caregivers around the world can virtually join the AiArthritis team as we attend research conferences. This is a one-of-a-kind opportunity to connect to the latest research, communicate with those attending, and learn how this information ties into improving disease management. … Continue reading...

read more

Sep 5, 2025

Global Remission Coalition

ASIF is a founding member of the newly-launched Global Remission Coalition (GRC), a platform for remission stakeholders to collaborate, advocate, and elevate the narrative about the value of remission to the patient, health systems and society. Its founding members and leadership envision healthcare systems that prioritise the pursuit of remission in chronic inflammatory conditions so … Continue reading "G...

read more

Sep 5, 2025

Brazil’s 24th Medical-Social Meeting on Rheumatic Diseases

Looking back on our first year of participation in ASIF, we can now proudly say that we are truly part of a global community. We’ve gained visibility, found a strong network to rely on, and created a space where we can share our stories, draw strength and inspiration from one another, and grow together. Being … Continue reading "Brazil’s 24th Medical-Social Meeting on Rheumatic Diseases"...

read more

Sep 5, 2025

23.7 million people reached

This year’s World AS Day campaign reached approximately 23.7 million people worldwide on social media. In addition, many of our members held events, in person and virtual, raising awareness with an even greater number of people. The campaign targeted rheumatologists and other heathcare professionals (HCPs), people living with axSpA but without a diagnosis, those with … Continue reading "23.7 million...

read more

Aug 15, 2025

Spanish axSpA Webinar

The Spanish speaking axSpA community were invited to an informative and interactive webinar on 5 July. The event, held in commemoration of World AS Day was co-hosted by ASIF and ASOPAN the pan-American network of rheumatic patient associations.  The half-day webinar, held in commemoration of World AS Day, was streamed on Facebook and YouTube. Inspiring … Continue reading "Spanish axSpA Webinar...

read more

Jun 9, 2025

Global Remission Coalition

We are delighted to announce that ASIF has become one of the founding members of the Global Remission Coalition which was launched on 21 May 2025 on the side of the World Health Assembly in Geneva, Switzerland.  The Global Alliance for Patient Access (GafPA) has, over the past 18 months, convened a series of stakeholder … Continue reading "Global Remission Coalition"...

read more

Jun 9, 2025

AFLAR

Rheumatology: a New Dawn in Africa, but what about Advocacy? Being members of the EULAR IPARE Working Group, Franklin Hiagbe, Maranda van Dam and Dieter Wiek (pictured) attended the African League of Associations for Rheumatology (AFLAR) Congress in conjunction with the Cameroon College of Rheumatology from 10 – 12 April 2025 in Yaoundé, Cameroon. EULAR … Continue reading "AFLAR"...

read more

Jun 9, 2025

EULAR: Come and say hi!

Will you be at EULAR in Barcelona? If so please, come and say ‘hi’ at the ASIF Booth (O13). We will be raising awareness of axSpA, our work around the world and about our members. Did you participate in Lace up for axSpA? Wear your orange shoelaces to EULAR and help us raise awareness of … Continue reading "EULAR: Come and say hi!"...

read more

Jun 9, 2025

ELEANA

The Hellenic League Against Rheumatism (ELEANA) became a member of ASIF in 2022 and participated in its Council Meeting for the first time in Copenhagen. At that time, when asked to present axSpA-related activities to fellow ASIF members, we had little to report beyond our annual participation in World AS Day. This accurately reflected the … Continue reading "ELEANA"...

read more

Jun 6, 2025

ASIF Webinar: HCP Education

Our recent webinar brought together speakers from the UK, Canada, and South Africa, who exchanged ideas, shared successes, and discuss challenges in raising awareness with HCPs with the aim of reducing the delay in the diagnosis of axSpA. Attendees joined the webinar from Panama to Ireland, the Philippines to Germany and many countries in between. … Continue reading "ASIF Webinar: HCP Edu...

read more

Jun 2, 2025

Thanks for visiting us at EULAR and scanning the QR code!

What do you think? The 7.4-year global average delay to diagnosis in axSpA is unacceptable. A major barrier to getting an axSpA diagnosis is the lack of awareness among family doctors and other non-specialist HCPs.   Help us understand how we can change this by completing this three-minute survey. Complete the survey now!    Axial Spondyloarthritis … Continue reading "Thanks for visiting us...

read more

May 23, 2025

Wow! What a World AS Day!

Awareness was raised with millions of people this World AS Day. ASIF’s social media posts reached 16.5 million people alone. We know our members, partners and individuals raised huge amounts of awareness online and at face-to-face events so the number of people who learnt about axSpA is much higher! Thank you to everyone who raised … Continue reading "Wow! What a World AS Day!"...

read more

May 7, 2025

Webinar: HCP Education

  The global delay to diagnosis in axSpA is unacceptable.  One of the major barriers to getting a diagnosis is the lack of awareness and knowledge among primary care physicians and other healthcare professionals (HCPs).    So how do we change this? It’s not easy! We know that it can be challenging to connect with … Continue reading "Webinar: HCP Education"...

read more

Mar 22, 2025

World AS Day 2025

World AS Day takes place on Saturday 3 May 2025. This year the theme is ‘Lace up for axSpA’. The campaign highlights the everyday challenges of living with axSpA. Tying shoelaces is just one example of an ‘everyday challenge’ – the materials feature other tasks including drinking from a water bottle, checking traffic before crossing … Continue reading "World AS Day 2025"...

read more

Mar 22, 2025

The Pursuit of Remission and Improved Quality of Life in axSpA

Join the Global Alliance for Patient Access (GAfPA) and ASIF’s for a webinar highlighting the value of pursuing remission in rheumatic and musculoskeletal diseases. ASIF Trustees Nadia Malliou and Lillann Wermskog, and Jo Lowe, Project Manager at ASIF, will be talking to Neil Betteridge, Strategic Advisor for European Alliance for Patient Access, about axSpA, an … Continue reading "The Pursuit...

read more

Mar 22, 2025

ASAS Annual Meeting

Jo Davies and Jo Lowe were delighted to attend the ASAS annual meeting in January.  This year’s event marked 30 years of ASAS and was held in Maastricht, in the Netherlands where the organisation was founded in 1995.  It was a fitting way to commemorate the success and achievements of ASAS over the last three … Continue reading "ASAS Annual Meeting"...

read more

Mar 22, 2025

APMARR

Associazione Nazionale Persone con Malattie Reumatologiche e Rare (APMARR), celebrated its 40th anniversary last year. APMARR’s mission is “to improve the quality of assistance and to improve the quality of life” offering help and information to people with rheumatic and rare diseases through volunteering, psychological support, awareness campaigns. APMARR runs national and local activities throughout … Continue reading...

read more

Mar 22, 2025

ASIF Council Meeting Report

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Mar 22, 2025

New Expert Advisory Committee

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

read more

Mar 22, 2025

New Treasurer for ASIF

  We are delighted to welcome René Bräm as ASIF’s new Treasurer. Rene is the director of the Swiss Ankylosing Spondylitis Association and is a board member and trustee of national associations and foundations in Switzerland. René has supported ASIF since its foundation, when for many years he was the treasurer as well as working as … Continue reading "New Treasurer for ASIF"...

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Dec 18, 2024

Introducing our new Trustees

Following our recent call for new Trustees, we are delighted to announce the successful appointments. Please read more about it here....

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Dec 8, 2024

Making Access Happen

As we know, timely access to affordable and appropriate medications can significantly improve health outcomes and enhance quality of life. By expanding treatment options and promoting competition, generic and biosimilar medicines can improve access, sustainability of healthcare systems, and alleviate the societal burden of untreated illnesses. Patient organisations provide a powerful voice for patients and … Continue read...

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Dec 8, 2024

Focusing on Latin America

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

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Dec 8, 2024

Rheumacensus

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

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Dec 6, 2024

EULAR PARE Conference

The EULAR PARE Conference is an annual educational and networking event featuring a different topic each year and offering a high-quality programme for the RMD community with keynote speakers, debates and workshops spanning three days. Running from 28-30 November in Brussels, this year’s meeting focussed on the role of patients and patient representatives in rheumatology … Continue reading "EU...

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Dec 6, 2024

American College of Rheumatology

Annual American College of Rheumatology annual meeting (ACR Convergence) 2024 took place November 14–19 in Washington, D.C.ASIF used ACR to continue dissemination of the International Map of Axial Spondyloarthritis (IMAS) findings.  Drs Victoria Navarro-Compán and Denis Poddubnyy (pictured) from the IMAS Scientific Committee presented the poster on ‘Factors Associated with Pain Intensity in axSpA’. The … Continue reading...

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Dec 6, 2024

First Latin American Regional Meeting

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

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Dec 5, 2024

ASIF Council Meeting 2024: Member Posters

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

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Nov 25, 2024

New President for CEADE

It is with great enthusiasm that we inform you that after the CEADE General Assembly held in Cordoba on June 29th 2024, it was agreed that a new Board of Directors would assume the responsibility of the organisation. Marco Garrido, who already served on the Executive Board as liaison with ASIF, has been elected as the … Continue reading "New President for CEADE"...

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Nov 25, 2024

Fundación de Espondilitis Anquilosante en Colombia

Since its creation, the Ankylosing Spondylitis Foundation in Colombia has contributed to helping those patients recently diagnosed, guiding, and promoting care to achieve a better quality of life and effectiveness in treatments or medical recommendations. The work carried out by the Foundation is achieved through social networks such as Facebook, Instagram, YouTube, LinkedIn and WhatsApp … Co...

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Nov 25, 2024

Bringing Together Patient Representatives at the ASIF Council Meeting

Perhaps the most important outcome from the meeting was the sharing of experiences and the strengthening of new and existing relationships. Running a patient organisation is incredibly rewarding but also hugely challenging. Knowing that the challenges faced are not unique and hearing how others have overcome them is incredibly powerful. Delegates heard a presentation on … Continue reading...

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Nov 23, 2024

Thank you

A message from Zhivko Yankov, President of ASIF “I would like to acknowledge two individuals who have played an essential role in ASIF’s journey: Raj Mahapatra and Maranda van Dam. Both have served ASIF with remarkable dedication and passion over the years, and their work has had a profound and lasting impact on the organisation. “Raj, your wisdom … Continue reading "Thank you"...

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Sep 12, 2024

World AS Day 2024 – Report

Thank you to our members for providing feedback on this year’s World AS Day campaign. Understanding what worked, what could be improved and hearing your ideas for future campaigns is invaluable as we evaluate the campaign’s success and begin thinking about 2025. We are delighted that the social media grants we awarded raised a significant … Continue reading "World AS Day 2024 – Repor...

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Sep 12, 2024

ASIF Council Meeting 2024: Update

  45 representatives from ASIF Members from 25 different countries will gather in Colombia in October for our biennial in- person Council Meeting. The programme includes workshops and discussions with our members to help guide ASIF’s work. Members have the opportunity not only to learn about the latest research in axSpA but also to workshop … Continue reading "ASIF Council Me...

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Sep 11, 2024

Reporting on EULAR 2024

Attending EULAR is one of the highlights of ASIF’s year. It is an opportunity to share our work with the international rheumatology and healthcare community, connect with our members and meet with our supporters. The axSpA patient community played an important role at EULAR, representing the international patient voice in one of the biggest rheumatology … Continue reading "Reporting on...

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Sep 11, 2024

Improving Access for Patients

The introduction of biosimilars – which are almost identical versions of ‘originator’ biologics whose patents have expired – is changing the prescribing landscape in axSpA. It is helping reduce costs to patients and healthcare systems and, if those cost savings are reinvested in axSpA services, can also lead to overall patient care being improved. In … Continue reading "Improving Acces...

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Sep 7, 2024

SpA Congress, Belgium

The annual International Congress on Spondyloarthritides took place in Ghent between 5 and 7 September.  This unique event brings together the world’s leading clinicians and researchers, focussing solely on the disease area of spondyloarthritis.  The congress is an important yearly event, ensuring that those working to develop better understanding of, and treatments for, spondylarthritis get … Continue reading...

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Sep 7, 2024

Bekhterev Norge

  Bekhterev Norge was initially funded as a diagnosis specific part of the Norwegian Rheumatology Association (NRF) in 1986. The aim was to increase the focus and awareness on axSpA within the full set of rheumatic diseases. Bekhterev Norge was established as a separate organisation in 2018. Bekhterev Norge is fully independent from the government … Continue reading "Bekhterev Norge"...

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Sep 7, 2024

Focusing on Latin America

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America....

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Jul 1, 2024

EULAR 2024

  Reflecting on EULAR 2024  For ASIF, the most important part of EULAR is meeting so many people who are passionate about improving the lives of people living with axSpA! Thank you to everyone who visited our booth and found out more about our work.   Having the opportunity to talk to rheumatologists and other healthcare … Continue reading "EULAR 2024"...

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Jun 26, 2024

Spotlight on IMAS

Shining a spotlight on the real-life impact of axSpA The Spotlight on IMAS event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. On the eve of EULAR 2024, the Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South … Continue reading "...

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May 31, 2024

Yoga for AS

Geoff and Jamie from Yoga for AS have produced a short documentary to show how the practices of yoga can benefit for people living with AS/axSpA.   Jamie commented, “We hope you enjoy the documentary, and it gives you a dose of inspiration, empowerment, and a sense of community. We are all in this together. … Continue reading "Yoga for AS"...

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May 31, 2024

Your SpAce

The National Axial Spondyloarthritis Society (NASS) has launched new resources for people living with axSpA to get the most out of their medical appointments and navigate their care. Together with people with people living with axSpA and healthcare professionals, they created short information and lived experience videos covering a range of topics in their Your … Continue reading "Your SpAce"...

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May 31, 2024

Biosimilar Medicines

AxSpA patients were recently represented at a biosimilar medicines patient leader workshop organised by Medicines for Europe. Rene Anour, Chair of the Biosimilar Medicines Working group at the European Medicines Agency (EMA) and Sarah Ikenberry from the US Food and Drug Administration (FDA) (pictured left) heard from ASIF’s Jo Lowe as she shared her thoughts … Continue reading "Biosimila...

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May 31, 2024

ASIF Council Meeting 2024: Colombia

  ASIF members from around the world will gather in Columbia in October for our Council Meeting. We have registrations from all continents and expect this to be the biggest ever meeting of organisations supporting people living with axSpA. All participating organisations will have the opportunity to present a poster and there will be plenty … Continue reading "ASIF Council Meeting 202...

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May 30, 2024

Spotlight on IMAS

  Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders.  ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work.  IMAS continues to help us understand how … Continue reading...

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Mar 7, 2024

IMAS in 2024

  Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA.  The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with … Continue reading "IMAS in 2024"...

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Mar 7, 2024

Axial Spondyloarthritis Association of South Africa wins Award

The Academic Excellence and Recognition Award was presented to Maranda van Dam, Chair of ASASA during the SARAA Congress 2024. ASASA won a similar award of excellence at the EULAR PARE (People with Arthritis/Rheumatism across Europe) Congress 2022. The SARAA award was based on significant advances made by ASAS towards improving the quality of life of … Continue reading "Axial Spondyloarthritis Asso...

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Mar 7, 2024

ReumaZorg

The National Association ReumaZorg Nederland is the national Dutch user-led patient organisation, that strives to make a difference in the lives of people with rheumatic and muscular diseases (RMDs). Having an RMD is a battle against a (lasting) disease, but also against pain, fatigue, loneliness and lack of understanding. Everyday people simply struggle to keep … Continue reading "ReumaZorg"...

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Dec 10, 2023

Galapagos Patient Partnership Day

On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world. On 15 November, Mike Mandelbaum and Jo Davies … Continue reading...

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Dec 10, 2023

Approaching the Conclusion: A Glimpse of the End for Ankylosing Spondylitis-Axial spondyloarthritis

Written by Muhammad A. Khan, MD, FRCP, MACP, Professor Emeritus of Medicine, Case Western Reserve School of Medicine, USA This year marks the 50th anniversary of the groundbreaking discovery linking HLA-B27 to ankylosing spondylitis (AS)[1,2]. Beyond HLA-B27, over 116 additional recognised genetic risk factors have been identified, while exploration of environmental factors in this context … Continue reading...

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Dec 10, 2023

ASIF Council Meeting 2024

ASIF Members from around the world will gather in Columbia in October for our annual Council Meeting. IMAS will feature as a central theme throughout the meeting. Presentations, discussions and workshops will include raising awareness among healthcare professionals, emerging therapies and research, and how our members can use IMAS to facilitate their work. One of … Continue reading "A...

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Dec 10, 2023

World AS Day 2024 Social Media Grants

ASIF is delighted to offer our members the opportunity to apply for a £500 World AS Day (WASD) Social Media Grant. The grant is to be used exclusively for boosting WASD social media posts and ads.   In previous years ASIF has boosted WASD posts to countries where our members operate, however the posts have linked … Continue reading "World AS Day 2024 Social Media Grants"...

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Dec 10, 2023

World AS Day 2024

Theme: Signs and Symptoms Date: 4 May The World AS Day social media assets have been created, the animations are ready, the webpage is live, and the Toolkit is ready for download! It was great to see so many of our members and industry partners at our World AS Day Webinar on 6 February. If … Continue reading "World AS Day 2024"...

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Dec 9, 2023

Patient Resources

  Did you know we have a set of three new infographics, which help to support people living with axSpA?  The resources aim to inform people how disease activity is typically measured; support them in building a partnership with their doctor; and assist them in focussing on their personal and lifestyle goals. The first of … Continue reading "Patient Resources"...

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Dec 8, 2023

EULAR PARE 2023 Conference

Mike Mandelbaum and Jo Davies from ASIF attended the EULAR PARE 2023 Conference in Brussels on 16 and 17 November.  This year’s conference was mostly about implementing the EULAR Manifesto Campaign, an advocacy campaign outlining RMD-related policy asks. The manifesto focuses on influencing three policy areas: Quality of care: improving RMD prevention, early diagnosis, treatment, … Continue reading...

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Nov 26, 2023

AGORA Conference

Written by Andri Phoka, President of Agora and Trustee of ASIF AGORA is an umbrella platform representing patient organisations of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Southern Europe. Each year our annual conference takes place in a different country hosted by one of our member associations. This year, the Association for Patients with Rheumatic … Continue reading "AG...

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Nov 26, 2023

Conferences and Events

  Dates for your diary from around the world If you would like your event listed, please email: communicationsmanager@asif.info 2024 MARCH 01-02     Rheumatology Update Europe, Amsterdam, The Netherlands and Virtual 1-4          Emirates Society for Rheumatology Annual Meeting in conjunction with 3rd Gulf Cooperation Council Rheumatology Conference, Dubai 13        … Continue reading "...

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Nov 26, 2023

Introducing our new Members!

ASIF has recently gained six new members from Aruba, Brazil, Montenegro, Pakistan, Panama and The Netherlands. We are delighted to introduce Gruparj Petrópolis Institute from Brazil and Arthritis Care Foundation from Pakistan below.    Gruparj Petrópolis Institute, Brazil Written by Wanda Heloisa Ferreira “Gruparj Petrópolis Institute completes 22 years of fulfilling its mission: to educate … Continue r...

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Sep 12, 2023

Building a Partnership with Your Doctor

Building a partnership with a doctor can help people get the most out of their axSpA treatment. A new ASIF infographic highlights how people living with axSpA can help to guide decisions about their healthcare and what that can look like in practice. This is part of a series of three infographics to support people … Continue reading "Building a Partnership with Your Doct...

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Sep 11, 2023

The psychological burden of axSpA and the support patient organisations’ can offer to their members

It is becoming clearer that depression and anxiety are prominent among people living with axSpA The European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS) describe how people living with axSpA experience their disease physically, psychologically and socially. Results show long diagnostic delays and a substantial physical and psychological burden, …...

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Sep 11, 2023

WASD 2023 Read our Report

  Awareness raised with 48 million people!   Read more      ...

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Sep 11, 2023

Read our report on EULAR 2023

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Sep 11, 2023

Scandinavian Rheumatology Conference

Spafo Norway attended the Scandinavian Rheumatology Conference (SCR 2023) in Copenhagen in August.  While there, they raised awareness of the challenges facing people living with axSpA, with rheumatologist, health care professionals and researchers. Read their Report  ...

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Sep 11, 2023

New awareness and advocacy tools!

Our new Delay to Diagnosis materials will help raise awareness of the key signs and symptoms of axSpA; and the devastating effects of the diagnostic delay. Three powerful short films, translated into nine languages, and an infographic on the diagnostic delay, including the physical, psychological and socio-economic impacts, will support our members in their advocacy … Continue reading...

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Jun 8, 2023

EULAR 2023

ASIF booth at EULAR 2023 in Milan, Italy Rheumatologists from Aruba to Argentina, Pakistan to Panama and so many countries in between spoke to the ASIF team about our work and the impact Patient Organisations make to the lives of people living with axSpA. During EULAR, some of the world’s leading researchers and rheumatologists discussed … Continue reading "EULAR 2023"...

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Jun 8, 2023

Member Spotlight: NASS

The National Axial Spondyloarthritis Society (NASS) in the United Kingdom recently launched Your SpAce, which has been created in partnership with people living with axSpA and healthcare professionals. Your SpAce allows people living with axSpA to engage with their condition, learn more about axSpA, and build skills to manage the impact it has on their … Continue reading "Member Spotlight...

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Jun 8, 2023

New Infographic: Preparing for Medical Appointments

The first in a set of infographics, aimed at preparing and supporting people for appointments with their doctors, is available on our website.  It explains how disease activity is measured, particularly through the BASDAI and ASDAS, as well as other assessments that may be done.  Future infographics will focus on what types of treatment targets … Continue reading...

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Jun 8, 2023

Global IMAS Report to be launched in January

Next month ASIF will launch its International Map of Axial Spondyloarthritis (IMAS) report, The burden of axial spondyloarthritis: a global patient perspective. The report demonstrates the challenges of living with axSpA – from getting a timely diagnosis to the health and socioeconomic impacts.  A core aim of IMAS is to incorporate the patient perspective and … Continue reading...

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Jun 8, 2023

Coming soon: New materials to help reduce diagnostic delay

We are finalising our new Delay to Diagnosis materials, which help raise awareness of the key signs and symptoms of axSpA; and the devastating effects of the diagnostic delay.  As well as three short films, translated into nine languages, ASIF will provide an infographic on the diagnostic delay, including the physical, psychological and socio-economic impacts.  … Continue rea...

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Jun 8, 2023

Why I’m an ASIF Trustee

Cassie Shafer is the CEO of the Spondylitis Association of America (SAA) and tells us why she joined our Board of Trustees. “As a long-time non-profit executive, I’ve had the honour to work with many different groups of people that are often underserved.  Serving these people, in whatever way I can, has been both fulfilling and … Continue reading "Why I’m an ASIF Truste...

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Jun 8, 2023

Member Webinar

The Psychological Impact of axSpA and the Role of Patient Organisations Date: 27 June Time: 14:00-15:00 BST Nadia Malliou will address the emotional and psychological impact of axSpA and how patient organisations can support their communities. Following Nadia’s presentation there will be an opportunity for discussion and to share ideas. About Nadia… “I am a … Continue reading "Memb...

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Jun 8, 2023

World AS Day reached more than 48 million

The World AS Day awareness campaign reached more than 48 million people around the world. This is a significant jump from previous years. And that is just half the story – our members, industry partners, healthcare practitioners and people living with axSpA posted, tweeted and shared content through their own channels resulting in the awareness … Continue reading "Wo...

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Mar 13, 2023

New Member Resources Webpages

ASIF are delighted that our new resources webpages are now live. The materials can be used by our members, and by patients and caregivers.  The improved site will also signpost healthcare professionals to relevant axSpA information and tools. Our mission is ‘to advocate globally to improve the lives of people affected by axial Spondyloarthritis and … Continue reading "New M...

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Mar 10, 2023

Member Webinar

Community/Direct Fundraising     Tuesday 21 March at 18:00-19:00 GMT Fundraising, specifically direct or sometimes known as community fundraising, is the topic of our March Webinar (postponed from February). Liz Marshall will speak about how NASS uses Walk Your AS Off to raise funds. Sean Ewart will discuss the different types of community fundraising that … Continue reading "Member W...

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Mar 7, 2023

ACR Report

  Michael Mallinson attended the  American College of Rheumatology (ACR) Convergence Meeting  in San Diego in November 2022.  He has provided a series of comprehensive reports on key sessions. Thank you, Michael for your commitment to sharing information for the benefit of people living with axSpA.   Click on the reports to read them: ASAS-EULAR … Continue reading "ACR Report"...

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Mar 7, 2023

ASAS 2023 – Annual Meeting Report

At the end of 2022, ASAS (Assessment of Spondyloarthritis International Society) and ASIF signed a Memorandum of Understanding (MOU) to put our relationship on a more formal footing. This MOU means that both organisations will aim to keep each other informed of key plans agree to identify opportunities for collaboration and will contribute expertise and … Continue reading "ASAS...

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Mar 7, 2023

Walk Your AS Off

Written by Jennifer Visscher, Walk AS One This year we want to see more teams participating in Walk Your AS Off than ever before. The Walk AS One team have been working hard to make the event more accessible, with the website now available in different languages. We encourage our members and supporters to create … Continue reading "Walk Your AS Off"...

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Mar 7, 2023

World AS Day 2023

This year’s theme is movement! World AS Day is only two months away. If you missed our World AS Day Webinar, you can watch it here. The Webinar talks you through the campaign, the available assets, and how you can make the most of World AS Day. One of the downloadable assets is a template … Continue reading "World AS Day 2023"...

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Mar 7, 2023

Introducing Mike

ASIF’s new Executive Director “I joined ASIF a few weeks ago, excited to embark on a voyage of discovery into the world of axSpA and rheumatology. While I have not yet sailed the high seas of axSpA, I have been inspired by the view from the shallow waters and am glad to share my early thoughts … Continue reading "Introducing Mike"...

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Mar 7, 2023

AFLAR Conference 2023 Report

Rheumatology a New Dawn in Africa but what about Advocacy? Author Maranda van Dam- ASIF Trustee, Chairperson ASASA South Africa There is a massive lack of rheumatologists in Africa. According to a study done by the ACR in 2015, the ideal ration would be 2:100 000. Africa currently has 150 rheumatologists serving a population of … Continue reading "AFLAR Conference 2023 Report"...

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Mar 6, 2023

Why I’m an ASIF Trustee

Ruta Grigiene from Lithuania tells us why she joined our Board of Trustees “I became a member of ASIF’s board of trustees in 2014, quite unexpectedly to myself. When I was diagnosed just half a year prior, I almost immediately got involved with the Lithuanian AS patients’ association. The association delegated me to participate in the ASIF conference, … Continue reading...

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Mar 6, 2023

Obituary – Prof. Dr. Ernst Feldtkeller (1931 – 2023)

Written by Dr. Muhammad Asim Khan It was with great sadness that we learned of the passing of Prof. Dr. Ernst Feldtkeller at 92 years of age (October 19, 1931 — January 4, 2023). He was truly a remarkable and inspiring person, scientist, and researcher, with a PhD in Physics. He was appointed Professor at … Continue reading "Obituary – Prof. Dr. Ernst Feldtk...

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Feb 1, 2023

New Executive Director for ASIF

We are delighted to welcome Mike Mandelbaum to the ASIF team as our first Executive Director. Mike has worked in the NGO sector for over 30 years, focusing on health and international development. He has managed palliative care services in the UK and been Chief Executive of a palliative care education charity working in Eastern … Continue reading "New Executive Director for ASIF...

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Dec 10, 2022

Report on the 5th Annual Scientific Meeting of BritSpA

Read our BRITSpA Conference Report 2022 It was held at the Park Regis Hotel, Birmingham, 14-15 September, 2022   Report written by Michael Mallinson...

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Dec 10, 2022

Member Webinar Series

Upcoming Webinar: Community/Direct Fundraising We will hold our next Member Webinar in February 2023 Future webinars will cover topics, including the latest research, fundraising, emerging treatments, membership, advocacy and others. If there are other topics that you would like to see covered, please email Jo de Bry at communicationsmanger@asif.info We are keen to know what … Continue reading...

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Dec 6, 2022

New book: Axial Spondyloarthritis and Ankylosing Spondylitis

World expert in axSpA, Dr. Muhammad Asim Khan, has published an update to his book Axial Spondyloarthritis and Ankylosing Spondylitis Dr Khan is Professor Emeritus of Medicine at Case Western Reserve University, USA, and has authored and co-authored seven books on AS-axSpA. “Written for patients by a patient who is also a leading authority on … Continue reading...

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Nov 25, 2022

AFS

Fabienne Lacombe, Director of AFS, provides an insight into their work. About AFS The France Spondyloarthritis Association (AFS) is an association of people with spondyloarthritis. It is run by patients, for patients and their relatives, regardless of their geographical location. The AFS is approved by the Ministry of Health, and its membership of ASIF enables … Continue reading "AFS"...

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Nov 24, 2022

Why I’m an ASIF Trustee

      Photo by by Morten Korgvold Lillann Wermskog, tells us why she chose to become an ASIF Trustee “I am the leader of Spafo Norway and I started writing for the member magazine before I joined its board. It is important to me to make a difference to other people, so I am … Continue reading "Why I’m an ASIF Trustee"...

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Sep 2, 2022

Nagaraja’s Ironman Triathlon

Nagaraja’s Ironman Triathlon The Founding Member and Secretary of Ankylosing Spondylitis Welfare Society (ASWS), Nagaraja Suryanaranappa (pictured left and below), has just completed his first Ironman Triathlon, in 15 hrs, 25 min and 34 sec. This mega event took place in Nur-Sultan, Kazakhstan on 14 August 2022. An Ironman Triathlon is one of a series … Continue reading "Nagaraja...

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Sep 2, 2022

Member Spotlight: Ankylosing Spondylitis Welfare Society

Ankylosing Spondylitis Welfare Society (ASWS), a patient-led organisation was established in 2020 to support fellow AS warriors and their caregivers across India. Being patients, we realised that mostly patients consult their local doctors, Orthopaedic Surgeons or focus on alternate therapies rather than visiting a Rheumatologist due to lack of awareness about Ankylosing Spondylitis and Rheumatology, …...

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Sep 2, 2022

ASIF Council Meeting, Copenhagen 29-31 May 2022 report

    ASIF Council Meeting, Copenhagen 29-31 May 2022      A full report on the 14th Council Meeting has been prepared by Michael Mallinson. This comprehensive narrative includes details from each session. Click here to download the report  ...

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Sep 2, 2022

IMAS update

The IMAS survey has now closed with a total of 5,557 participants from five continents. The data are now being analysed and the first results have been shared with the IMAS sub- and scientific-committees. Our members have been invited to a meeting on 22 September to discuss the results, how they will use them within … Continue reading "IMAS update"...

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Sep 2, 2022

Our Relationship with Physical Activity

Research Corner: Understanding Our Members’ Relationship with Physical Activity What supports people with Axial Spondyloarthritis to do physical activity? What hinders them? Lauren Angelil (physiotherapist, health coach and vice-chairperson of Axial Spondyloarthritis Association South Africa, pictured left) is asking these questions.She’s doing her masters in Physiotherapy with a specialisation in Behavioural Medicine. She’s interested in …...

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Jul 11, 2022

World AS Day 2022

Raising awareness of axSpA This year our World AS Day social media campaign reached 11.5 million and our posts and tweets were engaged with 1.4 million times. Excitingly, that is just from ASIF’s digital channels. The number of people who were exposed to World AS Day messaging is much larger than that, when considering the … Continue reading "World AS Day 2022"...

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Jul 11, 2022

Vale Margaret Lewington

It is with great sadness that we announce the passing of Margaret Lewington, physiotherapist of Brisbane, Australia in June.  A true champion of Ankylosing Spondylitis management, treatment and advocacy in the Musculoskeletal (MSK) healthcare and professional community in Australia and Internationally. Margaret played an integral role in the organisation and operations of the Ankylosing Spondylitis … Continue read...

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Jul 11, 2022

New Trustee

      ASIF is delighted and honoured to welcome Maranda van Dam from South Africa, to the ASIF Board. Maranda understands only too well the impact axSpA can have. In 2008 Maranda began experiencing symptoms; however, it took her almost 8.5 years of dead ends and frustration before she finally got a diagnosis. Knowing … Continue reading "New Trustee"...

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Jun 28, 2022

ASIF Council Meeting 2022

ASIF was delighted to welcome representatives from 23 of our member organisations to our Council Meeting between 29 and 31 May in Copenhagen, Denmark. The opportunity to meet face to face after the pandemic was embraced by nearly 40 representatives from 23 organisations. The wonders of technology allowed an additional five representatives from two other … Continue reading "ASIF Council Mee...

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Apr 12, 2022

ASIF Member Webinar Series

The potential to treat axSpA via the gut microbiome   Watch Dr Matthew Brown share his research into the link between axSpA and the gut microbiome in our inaugural Member Webinar. Dr Matthew Brown MBBS MD FRACP FAHMS FAA, is the Director, Guy’s and St Thomas’ NHS Foundation Trust and King’s College London NIHR Biomedical … Continue reading...

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Mar 21, 2022

ASAS Annual Meeting – Report

  ASAS Annual Meeting – Report Patient representatives from ASIF were invited to attend the ASAS (Assessment of Spondyloarthritis International Society) Annual Meeting, held virtually on 13-15 January, 2022. ASAS brings together international experts in the field of spondyloarthritis to support and promote the study of axial and peripheral spondyloarthritis, with a mission to increase … Continue reading...

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Mar 21, 2022

Delay to Diagnosis – New global Steering Group

New global Steering Group The launch of our Delay to Diagnosis Global report last summer was a significant milestone for ASIF.  The report was well received and we managed to spread the message far and wide; we presented the report at EULAR, at the Indian Rheumatology Conference, recorded a podcast about it and had an … Continue reading "Delay to Diagnosis – New global Steering Group"...

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Feb 5, 2022

EULAR PARE Podcast

    Eular Pare Podcast Listen to the Podcast featuring our Delay to Diagnosis project on: Spotify: https://t.co/4GhYeS4DxF iTunes: https://t.co/ei2400USmE   The podcast features ASIF’s Jo Davies and Jo Lowe, who talk with Peter Boyd about our Delay to Diagnosis project and report.   Thank you to everyone who voted for the ASIF Poster at … Continue reading "EULAR PARE Po...

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Dec 22, 2021

Report on Council Meeting

  We were delighted to see so many friends at the ASIF Virtual Council Meeting on 11 September. Jo Davies, Executive to the Board, welcomed everyone and introduced ASIF’s President, Zhivko Yankov. Zhivko’s presentation highlighted the work that ASIF had completed over the last year Joanne de Bry, Communications Manager, welcomed ASIF’s newest members who … Continue reading...

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Dec 22, 2021

Trustee recruitment

  Charity trustees are some of the most important people in a charity.  ASIF’s members are dependent on our trustees to make good decisions and lead well.  We look for a wide range of skills from our trustees, we need a trustee board that can challenge one another and the status quo, that bring different … Continue reading "Trustee recruitment"...

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Dec 22, 2021

SARS-COV-2 Vaccinations in RMD patients

The EULAR Task Force on COVID-19 has updated the EULAR View-points on SARS-CoV-2 vaccination in patients with RMDs (December 2021). The information addresses questions, including considerations regarding vaccination effectiveness and safety, the third vaccination dose, booster vaccination, combination with Influenza and Pneumococcus vaccination, among other frequently asked questions by people with RMDs. EULAR President, Prof Annamaria Iagnocco, …...

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Dec 22, 2021

AS features in The Good Doctor

  TV’s The Good Doctor, featured a storyline about a 21-year old with ankylosing spondylitis undergoing a life-altering operation. With an average viewership of 8.16 million, this American TV series will have raised awareness of AS with a new audience.   Here is a synopsis of the episode: Dr. Glassman (Richard Schiff) introduces his medical … Continue reading "AS feat...

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Dec 22, 2021

IMAS at EPIS

IMAS at EPIS In November, ASIF Secretary and Chair of the IMAS sub-committee, Andri Phoka, presented the IMAS project at EPIS.  EPIS is the European Patient Innovation Summit and, this year, was in the form of a virtual webinar series between September and November.  The 2021 summit focussed on matters relating to health data and … Continue reading "IMAS at EPIS"...

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Dec 22, 2021

India Rheumatology Conference

The 36th Annual Conference of the Indian Rheumatology Association (IRACON) took place between 9 and 12 December.  As a prelude to the full conference, we were delighted to be invited to the ‘Rheumatologists, patients and caregivers’ enclave’. This was a series of sessions bringing together patients and doctors to focus on different rheumatoid diseases. On … Continue reading "India Rheumatology Co...

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Dec 22, 2021

Scandinavian Rheumatology Congress (SRC) Features Key IMAS Findings

  Scandinavian Rheumatology Congress (SRC) Features Key IMAS Findings For patients living with axSpA, the burden of the disease can impact all areas of their life.  The survey results from the International Map of Axial Spondyloarthritis (IMAS) demonstrate the varied ways that people are impacted by this disease.  IMAS brings together researchers, rheumatologists and patient …...

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Dec 21, 2021

Highlights from ACR 2021

Highlights from ACR 2021 The American Congress of Rheumatology (ACR) again took place virtually, but the exchange on new findings was lively as usual in the SpA community. ASIF’s Scientific Advisor, Uta Kiltz attended the congress and provides an insight into the sessions through her personal highlights. The assessment of treatment response in axSpA patients … Continue reading "Highl...

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Dec 21, 2021

Delegates at EULAR PARE voted our poster in the top three

  Delay to Diagnosis wins 3rd place at EULAR PARE Delegates at EULAR PARE voted our Delay to Diagnosis poster presentation in the top three of the conference. Thank you to all who voted for us.   Highlights from EULAR PARE Get the information out there: monthly webinars – Ingrid Hennes, ReumaNet vzw ReumaNet vzw … Continue reading "Deleg...

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Dec 21, 2021

Talk to be Heard – New Global Campaign!

  New Global Campaign! Look out early next year for our new global ‘Talk to be Heard’ campaign! The campaign builds on the video released earlier this year for World AS Day, featuring people from around the world talking about the impact of axSpA on their emotional wellbeing.  This video will be refreshed and will … Continue reading "Talk to be Heard – New G...

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Dec 21, 2021

IMAS Largest ever study

  27 countries have contributed to IMAS 27 countries across five continents have now taken part in the International Map of Axial Spondyloarthritis (IMAS) – the biggest ever survey of people living with axSpA.  IMAS collects information about the impact of axSpA on all areas of life and is now in its final stages.   … Continue reading "IMAS Largest ever study"...

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Dec 21, 2021

World AS Day 2022

  We are developing the World AS Day 2022 campaign with guidance and input from our Sub Committee, made up of representatives from our member organisations. The campaign will focus on general awareness raising, rather than focusing on one impact of axSpA. We look forward to sharing more detail with you in the new year. … Continue reading "World AS Day 2022"...

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Dec 10, 2021

Important message to Patient Organisations

  Over many years, many Patient Organizations (POs) have met with members of the American College of Rheumatology (ACR) to discuss increased PO participation at annual scientific meetings, however to date little has been accomplished to implement change. Recently, other issues involving PO conference registration and membership status have been brought to the ACR’s attention … Continue reading...

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Nov 29, 2021

Register for the ASIF Council Meeting 2022

                Copenhagen Scandic Hotel, Vester Søgade 6, 1601 København V, Denmark 29 – 31 May 2022 Registration is now open for the ASIF Council Meeting 2022. The programme will include talks and workshops covering the latest in scientific developments around axSpA, and developments in treatment and the patient journey.  … Continue reading "Register for the ASIF Council Meeting 2022"...

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Aug 13, 2021

More countries launch IMAS

        The International Map of Axial Spondyloarthritis (IMAS) is the largest ever survey of people living with axSpA. IMAS collects invaluable information to assess the impact and burden of the condition from a patient’s perspective. To date, over 4,300 people have taken part worldwide and IMAS continues to expand, collecting data from … Continue reading "More countries l...

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Jul 29, 2021

A message from Souzi Makri, Chair of EULAR PARE

Dear ASIF community, dear friends, I am delighted that I have the opportunity to communicate with you through the ASIF newsletter and share my thoughts and excitement about my new post as Chair of the EULAR PARE Committee. I took over the Chairmanship of the Committee in June from my colleague and friend Elsa Mateus, … Continue reading "A message from Souzi Makri,...

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Jul 28, 2021

EULAR Report

EULAR Report 1. Dysbiosis (disruption or imbalance) of the gut microbiota (microorganisms). Immune-mediated diseases such as spondyloarthritis (SpA) consistently show an imbalance of the gut microbiota and frequently occur with other   inflammatory conditions such as Crohn’s disease (CD) and acute anterior uveitis (AAU). In a study, a total of 300 patients were recruited (111 with … Continue reading...

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Jul 28, 2021

Delay to Diagnosis Report Launched

        On 7 July, we held our launch events for our new Delay to Diagnosis report.  We were delighted to welcome patient organisations, patients, rheumatologists, other healthcare professionals, representatives from the pharmaceutical industry and researchers to the virtual sessions.   Attendees from over 20 countries took part in stimulating and valuable live Q&A … Co...

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Jul 28, 2021

World AS Day Highlights

Thank you to everyone who participated in World AS Day in May! We were delighted to see so many of our members using the social media assets and other resources to raise awareness. We are excited to start planning for World AS Day 2022. Please save the date for Saturday 7 May 2022. Thank you … Continue reading "World AS Day Highlights"...

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Jul 28, 2021

Developing Members’ Resources

    This project will provide members with an improved and more cohesive set of tools to assist you with fundraising; governance; lobbying and advocacy; communications and social media, as well as setting up a new organisation. These resources will be supplemented with a range of assets, including a new, digital ‘What is axSpA?’ brochure, … Continue reading "Developing Member...

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Jul 28, 2021

IMAS Continues to Expand

    The IMAS survey continues to expand and has now launched in the UK, Philippines and the USA. This provides the opportunity to collect invaluable data from people living with axSpA in these regions. The survey will be launched in Lithuania, South Africa and Argentina by the end of August and India is also … Continue reading "IMAS Continues to Expand"...

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Jul 26, 2021

The Reality of axSpA in our Country and Continent

We currently have 200 registered members that have axSpA. With a growing membership daily, our role has never been more important. If we look at the world numbers, and we use a conservative estimate in South Africa of 1 in 500, we would be looking at roughly 160 000 patients with axSpA in South Africa. … Continue reading "The Reality of axSpA in our Country and...

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Jul 8, 2021

EULAR Congress Features Delay to Diagnosis project

EULAR highlighted the project in an Abstract presentation, a Poster and a press release here ...

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Jun 4, 2021

EULAR Congress Features Delay to Diagnosis project

Dr Dale Webb, from the Delay to Diagnosis Sub Committee and Chief Executive of NASS, delivered the Poster presentation and Abstract presentation during EULAR 2021. EULAR’s recognition has been welcomed by everyone involved in the project. It has given ASIF an opportunity to raise awareness of the key issues created by the delay to diagnosis … Continue reading...

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May 18, 2021

IMAS Wins EFPIA’s Connecting Healthcare Award!

IMAS Wins EFPIA’s Connecting Healthcare Award! EFPIA’s independent jury chose IMAS as the overall winner from 60 projects   “Alongside our partners, Novartis and the University of Seville, I am proud to accept the 2021 Connecting Healthcare Awards – thank you EFPIA. I am delighted that IMAS has been recognised for the significant impact it … Continue reading...

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May 7, 2021

New Members

We are delighted to welcome three new members to ASIF: Hellenic League Against Rheumatism in Greece, the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) and Ankylosing Spondylitis  Welfare Society in India. Hellenic League Against Rheumatism Hellenic League Against Rheumatism was established in 1978 in Athens and today has 7,700 paid members and followers. The league … Continue reading...

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Dec 16, 2020

Few axSpA patients infected with COVID-19 – Survey shows

Despite concerns of possible risk factors, very few patients with axial spondyloarthritis have been infected with the coronavirus so far. “This is very good news. It looks like the axSpA-patients have been protecting themselves, adhering to the advice of the health authorities and taking the risk of infection seriously,” ASIF-president Zhivko Yankov says. By Trine … Continue reading...

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Dec 15, 2020

IMAS is expanding – News Update

The International Map of Axial Spondyloarthritis (IMAS), a patient experience survey, continues to be a hugely important project for everyone involved in the axSpA community. The project has produced a wealth of information, which is being used globally to raise awareness, support our advocacy efforts and, ultimately improve the lives of people living with axSpA. The … Continue reading...

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Dec 15, 2020

Delay to Diagnosis Project – News Update

    ASIF’s Delay to Diagnosis project focusses on the unacceptable delay in receiving a diagnosis that most patients with axSpA must endure. Through the project, we aim to better understand why the delay to diagnosis occurs; how this affects patients, their families and friends and healthcare systems. Crucially, we must decide collectively what ASIF can do … Continue reading...

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Aug 23, 2020

ASIF’s new members

In the last few months the Trustees have approved applications from 3 different countries and the number of ASIF’S members is now 47! Welcome to Fondation Enayarthrite Algérie Spondyloarthrites, in Algeria, StandForAS in India and ACE Arthritis Consumer Expert and its JointHealth™ family of programs in Canada. We look forward to working with you. Recently … Continue reading "ASIFR...

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Apr 28, 2020

ASIF/SAA axSpA and COVID-19 Survey

You can take part in critical research on COVID-19 in Axial Spondyloarthritis! We need as many people to take part as possible. There are too many uncertainties around what effect, if any, having axial spondyloarthritis may have on the pandemic currently encircling us.  Too many uncertainties around the possible impact of medications. We need to … Continue reading "ASIF/...

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Apr 19, 2020

What is Walk Your AS Off ?

Walk Your AS Off is a virtual walk event to get moving and raise awareness for axial spondyloarthritis. We encourage you to  “Walk Your A.S. Off!” in order to stay active and to keep your joints working as well as possible. Most people with axSpA benefit from regular exercise. Unfortunately, many of us don’t exercise … Continue reading "What is Walk Your AS Off ?"...

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Apr 1, 2020

Covid-19 News and advice from around the world

In order to help everybody, members and researchers have created detailed pages on their websites as a support during these extreme times. We hope they can contribute to ease the pressure by becoming a powerful tool helping to spread knowledge. Here below you will find links to specific pages. NASS the National Axial Spondyloarthrithis Society … Continue reading "...

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Apr 19, 2020

Global Spondyloarthritis Summit 2020 – Registration Now Open – 1-7 May 2020

Save the date, May 1-7, 2020 Registration is now open for the Global Spondyloarthritis Summit 2020 Save the dates, 1-7 May 2020, for the SAA’s 2nd Annual Global Spondyloarthritis Summit.  This year’s virtual Summit will feature 12 international experts presenting on topics such as pain management, advances in treatment options, diet & nutrition, exercise, progress … Continue reading...

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Mar 30, 2020

Covid-19 Global Registry

A Message from the Global Rheumatology Alliance: “Our mission is to create a secure, de-identified, international case reporting registry and curate and disseminate the outputs from that registry.” This registry will facilitate our primary goals, which are to: Understand the outcomes of patients with rheumatologic conditions who develop COVID–19 infection and the influence of their comorbidities … C...

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Jul 4, 2019

ASIF name change

At the recent AGM, members voted to change the name of ASIF to: Axial Spondyloarthritis International Federation.  Why? Because MRI can detect our disease much earlier than x-rays can, leading to people being diagnosed with Non-radiographic axial Spondyloarthritis, or nr AxSpA. Nr AxSpA has all the features of Ankylosing Spondylitis except for radiographic confirmation of … Continue reading...

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Jul 4, 2019

New infographics – available to be circulated and if necessary translated

With UCB, ASIF has created two new infographics One to explain the more recent terminology around Axial Spondyloarthritis, nr-asSpA and Ankylosing Spondylitis. The second to explain some of the statistics around Women and AxSpa. Women continue to be misdiagnosed because in many countries it is still incorrectly believed to be a disease that affects mostly … Continue reading "New...

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Oct 29, 2019

Rheumafit

Online exercise videos for AxSpA/AS and other arthritis patients That exercise is important for people with AxSpA/AS and other rheumatic diseases is repeatedly confirmed in scientific studies. However, various studies have shown that many sufferers are unable to take part in a group therapy course due to time constraints and geographical reasons. The Ankylosing Spondylitis … Continue reading "Rheumaf...

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Apr 5, 2019

New book by Dr Muhammad Khan and Philip Mease – Axial Spondyloarthritis

Focusing on the key essentials you need to know, Axial Spondyloarthritisprovides a quick, expert overview of axSpA from a clinical perspective. This concise resource by Drs. Philip Mease and Muhammad Khan presents practical recommendations and guidelines for the diagnosis, management, and treatment of spondyloarthritis impacting the axial skeleton alongside an overview of epidemiology, special populations, …...

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Apr 18, 2018

International Map of Axial Spondyloarthritis

The International Map of Axial Spondyloarthritis (IMAS) is a research initiative assessing the impact and burden of axial spondyloarthritis (axSpA) from the patient’s perspective. Developed by people living with axSpA, for people living with axSpA, the aim of this national and international collaboration is to generate insights into the real-life experiences of people living with … Continue reading "Int...

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Oct 29, 2019

Welcome to new member Walk As One

The Trustees approved an application from Walk As One to join ASIF at their meeting in September 2019. Their President and founding member, Ricky White, was diagnosed with AS in 2010. Walk AS One was created in 2015 after the continued success of the social media campaign Walk Your AS Off. Walk As One is … Continue reading "Welcome to new member Walk As One"...

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Jul 4, 2019

2019 Montane Spine Race

Congratulations Raj! ASIF Trustee, Raj Mahapatra has done it again! For an incredible third time, Raj has completed the Montane Spine Fusion Race. 268 miles (431 kms) of hilly trails over less than six days, all to achieve a personal challenge and to raise awareness of AxSpA/AS, which Raj lives with. A huge congratulations to Raj … Continue reading "2019 Montane Spine Race"...

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Mar 5, 2019

Welcome to new member – France ACS

At a meeting of the Trustees in February 2019, the application from Action Contre les spondylarthrites (ACS), a second association in France. ACS was founded in 1987 and has 3,500 members.  They organise many activities and publications and work at raising awareness. ACS organise the Journée Nationale de Spondyloarthrites or National Sponyloarthritis Day.  This year … Continue reading...

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Apr 30, 2018

ASIF 13th General Council Meeting

The 13th General Council Meeting was held in Guangzhou, China on 10-13 October 2018. We thank Dr Jieruo Gu and her team for hosting us and for all their assistance in making the event so successful. We had delegates from over 20 countries. Our speakers were all excellent and the workshops lively. This year we … Continue reading "ASIF 13th General Council Meeting"...

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Apr 20, 2018

Welcome to new member – Israel

At a meeting of the Trustees in January 2019, the application from INBAR, Israel was approved. INBAR is the Israeli Association for patients suffering fro rheumatic, autoimmunie and inflammatory diseases. It was founded in 1985 and in recent years has increased the number of activities related to AS. They work hard to raise awareness among … Continue reading "Welcome to new member...

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Apr 20, 2018

Welcome to new member – Ukraine

In November the Trustees approved the application from the Ankylosing Spondylitis Organization of Ukraine ASOU “Ankylosis.net” This is a very new organisation set up by Irina Bublik and her colleagues and formalised only in July 2018. Irina was diagnosed 8 years ago. She is a Pilates teacher and has studied the effects of exercise in … Continue reading "Welcome to new mem...

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Apr 20, 2018

Ankylosing Spondylitis vs Axial Spondyloarthritis (AS or axSpA)

ASAS has for some years referred to our group of diseases or conditions as Axial Spondyloarthritis. Many think that the term Axial Spondyloarthritis is more inclusive and covers the full range of people suffering with related conditions. There is some debate now as to whether ASIF, as an umbrella organisation, should consider changing its name … Continue reading "Ankylosing...

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Apr 30, 2018

Intimacy and AS

Michael Mallinson has lived with AS for over 35 years. He developed this content as a consultant to Novartis Pharmaceuticals Canada Inc. No payment was received. Let’s not hold back on this. You’ve got Spondyloarthritis and your back and some of your other joints hurt, a lot. You’ve also noticed that you’ve lost some flexibility and … Continue reading "Intimacy and AS"...

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