What is EULAR? Why attend – and how? What were the key outcomes for ASIF this year? What were the key presentations for axSpA?
Find the answers to these questions and more in our report!
Read our report on EULAR 2023
Author: Joanne de Bry
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.
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 and awareness raising efforts.
These materials are available in a toolkit alongside key messages and suggestions for social media content. The resources have not been designed for a specific timescale or timed campaign and so can be used at any time.
On 12 September 2023 ASIF will host two webinars to introduce the materials to our members. To register for the webinar, please email Jo Lowe.
The three main videos will be available on our website on September 12th and Jo will be able to give access to the full toolkits in different languages on request.
Read more about the campaign at Delay To Diagnosis Campaign – ASIF
Thank you to Dr Raj Sengupta for providing his expert opinion, and to Tseleng, Zhivko, Percival and Jo for their honesty and openness in sharing their personal experiences in these compelling videos.
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 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.
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 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.
Find out more about the programme at nass.co.uk/about-as/your-space
Would your organisation like to be featured in the next newsletter? Please email Jo de Bry at communicationsmanager@asif.org to find out more.
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 are important to patients and addressing barriers to shared decision making. Please let us know if you would like the infographic translated.
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 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.
Read more about IMAS.
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.
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.
Read more about the Delay to Diagnosis campaign.
Read the Delay to Diagnosis Report.
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 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.”
See our full ASIF Board
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 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.”
Watch our previous Webinars.