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News from around the world

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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"...

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...

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"...

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"...

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"...

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...

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"...

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...

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...

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....

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...

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...

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"...

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...

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...

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...

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"...

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"...

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"...

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...

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...

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"...

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...

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...

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 ...

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"...

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...

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"...

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...

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"...

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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