ASIF News Archives - Page 2 of 5

First Latin American Regional Meeting

At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.

ASIF Council Meeting 2024: Member Posters

During the ASIF Council Meeting our Members had the opportunity to display and present posters about their work.

It is inspiring to see the incredible efforts being undertaken around the world to improve the lives of people living with axSpA.

Bringing Together Patient Representatives at the ASIF Council Meeting

Perhaps the most important outcome from the meeting was the sharing of experiences and the strengthening of new and existing relationships.

Running a patient organisation is incredibly rewarding but also hugely challenging. Knowing that the challenges faced are not unique and hearing how others have overcome them is incredibly powerful.

Delegates heard a presentation on emerging therapies and research in axSpA and participated in workshops exploring what research is needed to support the work of patient organisations. They participated in a panel discussion on improving axSpA knowledge among healthcare professionals and heard about how they can help strengthen relationships between patient organisations and professional rheumatology bodies.

One of the most popular sessions focused on psychosocial support – where the gaps are, how patient organisations can support their members and best practices to overcome barriers. Throughout the meeting, delegates were invited to present a poster about their organisation, facilitating the sharing of experiences and an increased awareness about how different organisations work around the world.

“Learnings from the speakers, the moderators, the workshop leaders and the new information and knowledge acquired from other participants”, this was one of the responses to the question ‘what did you like best about the ASIF Council Meeting?’.

Much of what was discussed at the meeting will go on to inform ASIF’s work going forward. A full report on the ASIF Council Meeting, which was held in Colombia in October will be available early in the new year.

View our Members’ Posters

Thank you

A message from Zhivko Yankov, President of ASIF

“I would like to acknowledge two individuals who have played an essential role in ASIF’s journey: Raj Mahapatra and Maranda van Dam. Both have served ASIF with remarkable dedication and passion over the years, and their work has had a profound and lasting impact on the organisation.

“Raj, your wisdom and strategic insights have been invaluable. From guiding critical decisions to helping shape the future of ASIF, your leadership has steered us through both challenging and prosperous times. Your thoughtful contributions have left an indelible mark on this organisation, and ASIF is stronger because of your efforts.

“Maranda, your tireless work and commitment to ASIF’s mission have been nothing short of inspiring. You have been a driving force behind many of our key initiatives, and your passion for supporting people living with Axial Spondyloarthritis has brought us closer to our goals. Your dedication has made a tangible difference in the lives of those we serve.

“ASIF is what it is today because of the hard work, dedication, and vision that both of you brought to the table. We will forever be grateful for the time and energy you’ve invested in helping us grow and thrive. “On behalf of everyone at ASIF, thank you both for your service. While we will miss your presence on the board, we know that your contributions will continue to echo throughout the organisation for years to come. We wish you both all the best in your future endeavours and hope that our paths will cross again soon.”

World AS Day 2024 – Report

Thank you to our members for providing feedback on this year’s World AS Day campaign. Understanding what worked, what could be improved and hearing your ideas for future campaigns is invaluable as we evaluate the campaign’s success and begin thinking about 2025.

We are delighted that the social media grants we awarded raised a significant amount of awareness about axSpA and the work of our members.

Read our Report

World AS Day 2025

World AS Day 2025 will take place on Saturday 3 May. Each year a Sub Committee made up of our members chooses the theme and guides the development of the campaign. If you would like to join the Sub Committee, please contact Jo de Bry (communicationsmanager@asif.info) before 30 September.

ASIF Council Meeting 2024: Update

45 representatives from ASIF Members from 25 different countries will gather in Colombia in October for our biennial in- person Council Meeting.

The programme includes workshops and discussions with our members to help guide ASIF’s work.

Members have the opportunity not only to learn about the latest research in axSpA but also to workshop new programme ideas, share their own work, and discuss how to address organisational challenges. It is an opportunity for ASIF to gather important information about what is happening on the ground across the world to inform how we can better provide support to our member organisations.

Download the full programme.

ASIF Council Meeting 2024 Programme

The programme will include:

The role of patient organisations in improving knowledge about axSpA among healthcare professionals
IMAS (International Map of Axial Spondyloarthritis) and the wider patient-focussed research agenda
Clinical updates from Dr Wilson Bautista (regional) and Dr Raj Sengupta (global)
The provision of psychosocial support by patient organisations
Strengthening relationships between patient organisations and professional rheumatology networks
Opportunities for member organisations to share their own work.

For our members who will attend – please send your poster so that you can participate in the member presentations.

If you wish to attend and have not registered or if you have any questions about the Council Meeting, please contact Jo Davies (office@asif.info) as soon as possible.

The Council Meeting educational programme is sponsored by Novartis, AbbVie and UCB

Reporting on EULAR 2024

Attending EULAR is one of the highlights of ASIF’s year. It is an opportunity to share our work with the international rheumatology and healthcare community, connect with our members and meet with our supporters.

The axSpA patient community played an important role at EULAR, representing the international patient voice in one of the biggest rheumatology meetings in the world. We are proud to share reports on some of the work that ASIF members, trustees and staff presented at EULAR and their experiences of the meeting.

Read EULAR Report

SpA Congress, Belgium

The annual International Congress on Spondyloarthritides took place in Ghent between 5 and 7 September. This unique event brings together the world’s leading clinicians and researchers, focussing solely on the disease area of spondyloarthritis. The congress is an important yearly event, ensuring that those working to develop better understanding of, and treatments for, spondylarthritis get the opportunity to share their work and hear from other experts in the field.

ASIF was represented at the event by Marco Garrido-Cumbrera, who alongside Denis Poddubnyy and Victoria Narvarro-Compán (IMAS scientific committee), presented six posters from the International Map of Axial Spondyloarthritis (IMAS). IMAS was well represented at the congress with six out of a total of 28 posters in the first poster session.

Two posters were presented on regional differences observed in IMAS; one on the differences in clinical phenotypes and another in patient journey and healthcare utilis.

ation. One poster looked at factors associated with poor mental health and another with factors associated with pain intensity. A fifth poster covered the methodology and main findings of IMAS; and the final poster looked at demographic, disease and geographic elements of the diagnostic delay.

Whilst many sessions at the SpA congress were highly scientific in nature, there were several sessions that are of interest to patients and patient organisations. Felicie Constantino (France) gave a presentation on ‘severe axSpA’ and how the severity of the disease is, or could be, assessed. We were pleased to see that, during the presentation, she used a slide from the European Map of Axial Spondyloarthritis (EMAS) to demonstrate the impact of the disease on working life.

Felicie Constantino presentation, what is severe axSpA?

The congress ‘clinical grand debate’ was about how people respond to treatment and whether the main treatment target should be pain or inflammation. The motion proposed was ‘control of pain is the key outcome in SpA’, which was argued by Kurt de Vlam (Belgium). Opposing the motion was Atul Deodhar (USA), who argued that inflammation is the key outcome measure. He argued that, by focussing on pain, other key outcomes, including inflammation are likely to be overlooked; and that using pain reduction as the key target would be a step backwards in the management of Spondyloarthitis.

Focusing on Latin America

We are now increasing our focus on Latin America. This began last November at the EULAR PARE meeting of patient advocates. A few people from outside Europe had been invited, including a representative of the ASOPAN network of 60 Latin American associations that support patients with rheumatic conditions.

Through discussions over the following months, including at April’s PANLAR conference in Colombia, we realised there was a great opportunity to form a partnership between our two organisations. We can learn from ASOPAN about the key issues and challenges across Latin America, and then adapt ASIF’s support to best meet the regional context. This will help ASOPAN’s members integrate axSpA into their activities.

At next month’s Council meeting in Bogotá, our participants from Latin America will start work one day early with an extra meeting looking at the role of patient organisations in helping people with axSpA in Latin America. We will spend the day discussing the challenges facing people with axSpA in the region; gaining practical insights from ASIF’s Latin American members about how they address these challenges and support people with axSpA; and outlining a future programme of activity between our two network organisations.

We hope this will not only be a successful new initiative, but will also be a model we can adapt to other parts of the world. We are very excited about this and look forward to telling you more about it in future.

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