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.

 

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

Abbvie, Novartis and UCB logos

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!