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 the importance of patient centric research and care. We explored our priorities with our industry partners and how, by strengthening our relationships, we can develop projects that our members can use to change lives.
We will share a report on EULAR soon.
AiArthritis’ Go With Us to EULAR 2023 Live Debrief
Saturday, Jun 17, 2023 on Facebook at 12:00 pm EST / 9:00 am PST (USA).
Click here to attend the debrief live or find out how to watch it on demand.
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 life.
The programme is free to access on the NASS website and YouTube channel. It includes co-produced, short informative videos on topics such as pain, fatigue and flares. There are downloadable resources in each topic, so people living with axSpA can create their own personalised toolkit.
Your SpAce provides a community for people who are at the start of their axSpA journey or who are struggling and feeling isolated. Building a supportive community through monthly online meetups, which provide a relaxed way to connect with others living with axSpA, share ideas and get support. Embedded in the topics are videos of people with axSpA sharing their experiences.
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 are important to patients and addressing barriers to shared decision making. Please let us know if you would like the infographic translated.
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 experience into healthcare policy and into decisions about axSpA care. To support this, the report contains calls to action, aimed at healthcare professionals and policymakers. These include ensuring the needs of axSpA patients are fully understood, that a multidisciplinary approach is taken to care and that healthcare professionals are better equipped to recognise the signs and symptoms of axSpA.
The report will be an invaluable advocacy tool for our members and is an essential read for anyone interested in the impact of axSpA. Using IMAS results, we underline the real-life burden of axSpA on both an individual’s life, and on healthcare utilisation.
In the lead up to the publication of the Report, ASIF continues to spread the word about the reality of living with the disease. Our abstract and presentation at this year’s EULAR congress demonstrated how axSpA can affect almost every area of a person’s life and highlighted numerous unmet needs of those living with the disease.
In November, we presented a poster on the IMAS findings and forthcoming global report at the Galapagos Patient Partnership Day and the EULAR PARE Best Practice Fair. Both events gave ASIF the opportunity to share the IMAS project with other patient organisations and to demonstrate how we can use the evidence gathered through IMAS to advocate for change.
We will continue to disseminate the important results from IMAS; we are busy working with the IMAS scientific committee to prepare five new IMAS abstracts for submission to EULAR 2024.
To coincide with the report publication, new webpages highlighting IMAS’ key findings will be published on the ASIF website, providing a fascinating deep dive into the data. Additional materials, including an advocacy toolkit and infographic showing the key IMAS findings, have also been created to support our members’ work. These resources will be available in January.
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.
These materials will be delivered in a toolkit alongside key messages and suggestions for social media content. These resources will be available in August, but can be used at any time. Look out for a forthcoming invitation to a webinar, where we will introduce the full set of resources.
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 humbling.
“Shortly after joining the Spondylitis Association of America, I discovered something truly unique about those living with spondyloarthritis. The word ‘community’ is often used to describe groups of people bound by a common thread. But after working side by side with the patients, loved ones, caregivers, and the dedicated medical professionals who devote their efforts to improving outcomes, I discovered a true community of people whose strengths define them much more strongly than their disabilities.
“The Axial Spondyloarthritis International Federation helps to ensure that spondyloarthritis organisations across the globe, large and small, have access to the tools and information needed to serve their constituents. I am honoured to play a part in their important work. We are always stronger together.”
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 professional psychologist, with experience in various professional contexts in mental health services and administration. I have specialised through further training with the European Pain Federation EFIC in chronic pain management and for the last few years I have been working with the Pain Unit at the Thessaloniki General Hospital AHEPA to offer help and support to as many patients with rheumatic diseases as I can.”
“My experience both in management positions and my training and involvement with teams has helped me to offer, and continue to wish to offer, as much as I can to the Hellenic League Against Rheumatism EL.E.AN.A. For the last 5 years I have been intensively involved in chronic pain management, both academically and clinically, through projects and collaborations of the association, such as the collaboration with the Medical Physics and Digital Innovation Laboratory of the Aristotle University of Thessaloniki to create pain management applications.”
“I have represented my country in the EULAR PARE and EULAR conferences and in the congress of the EUROPEAN PAIN FEDERATION EFIC. At the first congress of the World Patients Alliance, I had the pleasure of meeting many patients from around the world, to associate with health professionals and to gain useful experience and knowledge, always aiming to apply them in Greece.”
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 campaign reaching a much larger number. In addition to social media, in-person and online events were held around the world, including a series of walks in South Africa, workshops in Colombia, and conferences in Italy and Spain.
More than 70,000 people visited the ASIF website during the campaign, with over 90% of them spending enough time on the World AS Day page to understand the campaign and learn more about axSpA.
A comprehensive report on the campaign is being written and will be shared with members soon.
Global Stretching Events
Yoga for AS
Two ‘Stretch and Move’ events got people moving on World AS Day
The events, run by Jamie Boder and Geoff Lindsay, co-Founders of Yoga for AS were designed specifically for people with axSpA.
Jamie and Geoff, who both have axSpA, provided options for each pose, making the sessions accessible to everyone regardless of their level of flexibility.
The sessions were watched on our website and social media channels. Delegates at the SAA’s Global Spondyloarthritis Summit had the opportunity to watch the sessions during the Summit in the Activity Lounge.
The sessions are available to watch on our website. They will feature on our Resources webpage long-term so they can be used at any time.
Walk Your AS Off
This year 86 teams from 39 countries reported over 102 million steps on our way to Mars!
Written by Jennifer Visscher, Walk AS One
This virtual walking campaign brought together people from around the world, united by a common goal—to raise awareness and support for axSpA and related spondyloarthritis diseases.
The campaign’s achievements are a testament to the strength, determination, and unwavering support of the incredible community of participants.
Uniting for a Shared Cause
The Walk Your AS Off campaign rallied individuals affected by axSpA and AS, their families, friends, and supporters, generating a powerful sense of unity. Together, participants embarked on a journey, symbolising the daily challenges faced by those living with the disease.
The impact of the 2023 Walk Your AS Off Campaign was felt not only within the community but also in the broader public sphere. Through the dedication and passion of participants, the campaign spread awareness, educating others about the condition, and broke down stigmas associated with invisible illnesses.
As Cheryl said, “I had no idea I could do even 200 steps a day. When I was inspired to join Walk Your AS Off, I couldn’t believe I was doing thousands of steps a day and I could see and feel my progress. Walk Your AS Off gave me the courage and community I needed to take steps to be more active and I’m so very grateful for that.”
A Global Movement
One of the most remarkable aspects of Walk Your AS Off is its ability to connect individuals from all over the world. The campaign transcends borders, fostering a global movement that promotes solidarity, empathy, and understanding. It has created an international platform for sharing experiences, providing support, and spreading awareness about axSpa on a global scale. Congratulations and Appreciation
To every participant, supporter, and volunteer involved in this year’s campaign, we extend our heartfelt congratulations and deepest appreciation. Each step taken, every conversation initiated, and every dollar raised has made a difference in the lives of individuals living with AS.
2023 Global Spondyloarthritis Summit
Recap of SAA’s 5th Annual Global Spondyloarthritis Summit
Written by Jason Blackwell, SAA
SAA’s 5th Annual Global Spondyloarthritis Summit is a two-day virtual event designed by and for the spondyloarthritis community.
Held each year across World AS Day during SpA Awareness Month, the Summit features 12 global rheumatology and health experts, presentations and speakers are vetted by an advisory committee composed of patients and physicians to identify the topics that are most important for people living with the disease.
Now in its fifth year, the Summit had more than 3,000 registrants attend from 92 countries. Our post event survey found that 98% of respondents would recommend the Summit to others living with SpA, and 99% plan to attend in 2024!
This year’s program featured the topics below:
What is Spondyloarthritis? An Overview presented by Christine Stamatos, DNP, ANP-C, Northwell Health
Medications for SpA – Including New (i.e., JAKs) and What’s on the Horizon. Drug Combinations & Interactions presented by Robert Inman MD, FRCPC, FACP, FRCP (Edin), Schroeder Arthritis Institute at University of Toronto
SpA Research Update (Advanced Topic) presented by Kristi Kuhn, MD, Ph.D., University of Colorado Anschutz Medical Campus
Cardiovascular Disease and Spondyloarthritis presented by Jean Liew, MD, MS, Boston University School of Medicine
When is Spine Surgery Recommended? Albert P. Wong, MD, DOCS Surgical Hospital
The Role of Genetics in Spondyloarthritis. Genes Associated (HLA-B27 and Beyond), Heritability (Advanced Topic) presented by Judith Smith, MD, Ph.D., University of Wisconsin School of Medicine and Public Health
Women & Spondyloarthritis: Childbearing Years Through Menopause presented by Peter Taylor, MA, Ph.D., FRCP, FRCPE, University of Oxford
Sleep & Spondyloarthritis presented by Soha Dolatabadi, MD, Arthritis and Pain Relief Medical Center
We’d Like to Know: Cannabis Update presented by Mary-Ann Fitzcharles, MD, McGill University
Diet & Nutrition: How/Why Does Gut Microbiome Affect Spondyloarthritis (Advanced Topic) presented by Mathew Stoll, MD, Ph.D., MSCS, University of Alabama at Birmingham
Flares: Possible Triggers to Avoid & How to Treat a Flare presented by Pendleton Wickersham, MD, FACP, Arthritis Associates PA
Tai Chi: Meditation in Motion with Live Demonstration presented by Soneka Lee, DPT, Golden Days Wellness Training, LLC
In addition, the Summit also featured other interactive elements such as a Leaderboard Challenge, Daily Quizzes, BASDAI calculator, Exhibit Hall, Poster Hall, and yoga programs in the activity lounge. We are grateful to everyone who played a role in helping to make the Summit successful, including our sponsors and our partners.
