Conferences and events Archives - Page 2 of 3

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 professionals face to face is invaluable. We spent much of our time discussing the IMAS Global Report and the real-life impact of axSpA. The results from the report echoed what many clinicians told us they hear every day: in particular that the delay in diagnosis can have a debilitating impact, and that many of their patients experience poor mental health due to their condition.

Hundreds of rheumatologists took away a copy of the IMAS Global Report. We hope the content and calls to action will help them work in partnership with their patients to improve health outcomes. Furthermore, we hope the reports are shared with colleagues and the information is disseminated through their networks.

Three IMAS posters were presented at EULAR, as well as a publication-only abstract. The posters gave an opportunity to learn more about the factors are associated pain intensity and poorer mental health. The third poster looked at the regional differences for patients on their journey to diagnosis and their use of healthcare systems.

Representatives from many of our member organisations attended EULAR. Meeting these dedicated individuals in person is invaluable. EULAR presents an opportunity to bring our members together for informal conversations and networking, which frequently leads to new ideas and opportunities.

EULAR also provides a rare opportunity to meet with representatives from industry face-to-face, exchanging updates and exploring opportunities for future support and collaboration.

As always, the scientific programme, posters and workshops were outstanding. Hearing about the new developments in axSpA research is exciting, and listening to presentations about improving the care and outcomes of people living with the conditions is hugely positive.

We were also excited to have an ASIF poster presented by Jo Lowe, ASIF’s Project Manager, about our Delay to Diagnosis awareness campaign. The project produced three films and full social media toolkits in nine languages to our members to help them spread the word about the signs and symptoms of axSpA.

Over the coming weeks we will share further reviews of key EULAR sessions that will interest our members.

The evening before EULAR opened, we hosted the Spotlight on IMAS event. The event brought together people living with axSpA, representatives from patient organisations, rheumatologists, researchers, and some of our industry partners. The Wiener Rathauskeller in Vienna proved the perfect venue to welcome attendees from Brazil to Norway, South Africa to Canada, India to Ukraine. Read more about the event.

If you would like more information about our work, supporting a patient organisation in your country, using the IMAS data in your country, or anything else please contact us.

Read IMAS Global Report

Explore the IMAS data in Numbers

Read about Spotlight on IMAS event

Information for people living with axSpA

Information for Patient Organisations

Spotlight on IMAS

Spotlight on IMAS, Vienna, June 2024

DSC 0013Spotlight on IMAS, Vienna, June 2024

Spotlight on IMAS, Vienna, June 2024

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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 Africa to Canada, India to Ukraine.

Andri Phoka, ASIF Trustee, welcomed everyone, provided an overview of IMAS and thanked Novartis for transferring ownership of IMAS to ASIF.

Professor Marco Garrido Cumbrera explored the IMAS findings and their real-life impact. Punctuating Marco’s presentation were videos from people around the world who shared the impact that axSpA has had on their lives. Annie from Australia shared how her delay to diagnosis led her not to have children; in Colombia axSpA prevented a young woman from working, leading her to be financially dependent on her father. Tsleng from South Africa described how she lost friends as they didn’t understand what she was experiencing. Andri from Cyprus shared how axSpA is just one of the physical conditions that she faces, alongside Chron’s disease and hypertension and how managing all her physical symptoms is incredibly challenging.

The recently published IMAS report, “The Burden of Axial Spondyloarthritis: a global patient perspective” underlines that axSpA is not simply a physical disease that needs to be treated. It impacts every area of a person’s life and life choices. Therefore, the average seven-year delay to diagnosis must be reduced and healthcare professionals need to consider the impact on an individual, focusing on quality of life and providing multidisciplinary care.

Dr Victoria Navarro Compán, President Elect of ASAS, spoke about her pleasure at seeing the IMAS project develop from the national survey in Spain in 2017 into a European and then a global initiative; the importance of the IMAS findings; and the potential of them to educate healthcare professionals and influence clinical practice.

Mike Mandelbaum, Executive Director of ASIF closed the main presentations by sharing ASIF’s plans for IMAS in the future. He shared that IMAS will be a cornerstone of a new advocacy strategy which ASIF will develop over the coming months.

He commented “Most change happens at local and national levels, so we plan for more of our work to respond to national and regional social and healthcare systems dynamics and priorities. We therefore plan a regional Latin American IMAS report, which will compare individual country data to aggregated regional data in ways which shine a spotlight on where individual countries are performing well or poorly against their closest peers. We believe this can become a powerful advocacy tool.”

Questions and a panel discussion followed the presentations, focusing on how the IMAS Report can be used at a national level.

Over dinner, attendees continued conversations about the impact of axSpA in their countries and how the IMAS Report can be used to leverage change.

Thank you to our presenters and to everyone who attended the event. If you have questions about the event, about IMAS or how you can use the IMAS Report in your country, please contact Jo Lowe.

Read IMAS Global Report

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 of time to network and to share ideas. The programme will incorporate talks, panel sessions and workshops and will include:

The role of patient organisations in improving knowledge, attitudes and skills among healthcare professionals
IMAS and the wider patient-focused research agenda
Key axSpA issues in Latin America
Emerging therapies and new research in axSpA
The provision of psychosocial support by patient organisations: needs, gaps and best practice from around the world
Building the visibility and role of patient organisations in professional rheumatology networks.

In addition, we will hold a regional meeting for members and other stakeholders from Latin America on the afternoon of 16 October, the day before the main meeting begins.

We are very grateful to Julieth Buitrago from our Colombian member, Espondilitis Anquilosante en Colombia for her continuing help with the logistics.

If you have not yet registered or have questions, please contact Jo Davies. There is still plenty of time to get involved!

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.

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.

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 the most anticipated sessions will be an opportunity for our members to present their organisations, campaigns and work. Importantly, delegates will have time to network, share ideas, build new relationships and create opportunities for collaboration.

Invitations have been sent and we look forward to assisting delegates with their attendance. Please contact Jo Davies (office@asif.info) with questions about the Council Meeting.

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, and rehabilitation interventions.

Social Policy: mitigating the burden of RMDs on health-related quality of life, education, and employment.

Research and innovation: developing better RMD prevention and treatment strategies.

You can find out more about the EULAR Mainfesto at www.eular.org/eular-manifesto.

The campaign is largely focussed right now on influencing European Parliament. However, the manifesto will have resonance with all of us and it is a document that could be adapted to suit other countries.

Everyone who attended EULAR PARE also took part in the Best Practice Fair. Forty posters were presented; Mike presented an ASIF poster on IMAS (pictured above). It was wonderful to see the work that other organisations are doing. There were a number of ASIF members at the event.

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 Diseases Montenegro (NVO RAM) hosted the conference. The theme was Empowerment to manage our own health and our own care.

Participants at AGORA Conference — Delegates at the AGORA Conference

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.