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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....
Dec 8, 2024
Focusing on Latin America Copy
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 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...
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....
Dec 18, 2024
Introducing our new Trustees
Following our recent call for new Trustees, we are delighted to announce the successful appointments....
Dec 8, 2024
Focusing on Latin America Copy
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 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...
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....
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....
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...
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"...
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...
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...
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...
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
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....
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"...
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 "...
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...
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...
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...
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"...
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...
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...
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"...
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"...
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"...
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...
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...
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...
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, …...
Sep 11, 2023
WASD 2023 Read our Report
Awareness raised with 48 million people! Read more ...
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...
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
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...
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...
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...
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...
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...
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...
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...
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...
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"...
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...
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...