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 people living with axSpA in South Africa, as well as training done to build awareness in the medical fraternity around the condition.
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 participating: at home, at school and at work.
We work and lobby for an early diagnosis, good healthcare and a healthy active life for people with axSpA. AxSpA mostly affects the spine, causing damage visible on X-ray (ankylosing spondylitis) or damage that doesn’t show up on X-rays (non-radiographic axSpA). Our advocacy aims at supporting people in the best way possible. We want to achieve this together with all people with axSpA and their families, researchers, healthcare providers and other stakeholders who can contribute to this.
As a national patient organisation, RZN is the member of EULAR for PRE for the Netherlands. It is also an associated member of EURORDIS.
Find out more about us at reumazorgnederland.nl
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 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.
The aim of the day was to share ideas about what good patient engagement (PE) is.
Patient engagement is maturing. Patients are rightly becoming more important in research and with policy makers and pharmaceutical companies.
There were sessions covering best practice, the importance of shared decision-making in clinical trial settings. There was also an opportunity to take part in workshops in patient engagement and communications and health literacy. The day ended with a poster session and dinner. ASIF members were also present, including Antonella Celano from APMARR and Andri Phoka from Cyplar, EULAR PARE, Agora and an ASIF Trustee.
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 Diseases Montenegro (NVO RAM) hosted the conference. The theme was Empowerment to manage our own health and our own care.
Throughout the two days, we had the honour of hosting expert speakers from our partner organisations around Europe and the USA. They shared knowledge on mental health, strategic planning, empowerment and raising awareness. Mr Raj Mahapatra, President of National Axial Spondyloarthritis Society (NASS) in the UK, spoke about how patient organisations can be successful and expanded on strategic planning. I presented a project together with ASIF on how other countries work and how we can raise awareness for patient associations.
Funding from our industry supporters enabled us to create a professional and high-level conference, which will impact the advocacy work of patient associations. The feedback from delegates was overwhelmingly positive.
The AGORA Annual Conference will be hosted by ARAM in Malta in 2024.
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!
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.
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.
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.
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 Recommendations for the Management of Axial Spondyloarthritis: 2022 update
For an Exploratory Analysis of the Potential Disconnect between Objective Inflammatory Response and Clinical Response following Certolizumab Pegol Treatment in Patients with Active Axial Spondyloarthritis, read here.
Bimekizumab Improves Signs and Symptoms, including Inflammation, in Patients with Active Non-Radiographic Axial Spondyloarthritis: 24 Weeks Efficacy and Safety from a Phase 3 Multicentre, Randomized, Placebo-Controlled Study, read here.
Continuing (Full or Reduced Treatment) versus Withdrawing from Golimumab in patients with non-radiographic axial spondyloarthritis who Achieved Inactive Disease: Efficacy and Safety Results from a Placebo-controlled, Randomized Withdrawal and Retreatment Study (GO BACK), read here.
Comparison of the Effect of Treatment with NSAIDs added to Anti-TNF therapy versus Anti-TNF therapy alone on Progression of Structural Damage in the Spine over Two Years in patients with Ankylosing Spondylitis: an Open-Label Randomised, Controlled, Multicentre trial (CONSUL), read here.
Profiling of Systemic Immune Responses in Axial Spondyloarthritis Patients reveals Strikingly Distinct Cellular and Molecular Mechanisms of Action of IL-17A Inhibitors and TNF Blockers, read here.
For Action Council Pathway, read here.
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 experience towards mutually agreed objectives.
The Trustees of ASIF were delighted to be invited to send two representatives to attend the ASAS 2023 Annual Meeting which took place in Athens in January. Andri Phoka, Secretary, ASIF and Jo Davies, Assistant Director, ASIF joined the meeting.
We are especially thankful to Xenofon Baraliakos, President of ASAS and to the rest of the Executive Committee for making us so welcome. During the meeting, ASAS educational activities and research projects were presented and discussed. This report covers just a few highlights from the ASAS 2023 Annual Meeting.
