ASIF News
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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"...
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...
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...
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...
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"...
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...
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...
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
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...
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 "...
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
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 ...
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
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...
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
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
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"...
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"...
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 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
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...
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...
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...
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...
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...
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...
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"...
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"...
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...
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, …...
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 ...
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"...
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 …...
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"...
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...
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"...
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...
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...
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...
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"...
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...
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...
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"...
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, …...
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...
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"...
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...
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 …...
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...
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...
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...
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"...
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"...
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...
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"...
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...
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,...
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...
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...
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"...
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...
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"...
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...
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 ...
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...
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...
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...
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...
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...
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...
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...
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/...
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 ?"...
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 "...
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...
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...
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...
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...
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...
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, …...
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...
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"...
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"...
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...
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"...
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...
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...
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...
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"...