ASIF Council Meeting 2022

ASIF was delighted to welcome representatives from 23 of our member organisations to our Council Meeting between 29 and 31 May in Copenhagen, Denmark. The opportunity to meet face to face after the pandemic was embraced by nearly 40 representatives from 23 organisations.

The wonders of technology allowed an additional five representatives from two other members to participate in the meeting remotely. We also opened few sessions to our corporate partners so they could understand more about ASIF, its members and what we do.

A full report will follow, but for now here is just a snapshot…

Many of our members created posters exhibiting their work, these were displayed around the meeting room, and can be see below.

Nine of our members presented their posters and explained how their organisations support people living with axSpA and work to improve the lives of those affected. Here are just a few of the many highlights from those sessions:

Thank you to Merian Bastrup Clasen from the Association for Spinal Arthritis and Morbus Bechterew in Denmark for her help and support with the Council Meeting.

Lillann Wermskog and Lise Mette Eidet from Spafo Norge shared beautifully created patient videos that they are using to raise awareness.

Presenting with the South African flag draped around her shoulders, Maranda van Dam from Axial Spondyloarthritis Association of South Africa shocked the room with the reality of the number of rheumatologists in South Africa – just 85 for a population of 60 million.

Iryna Bublyk brought us to tears with the reality facing Ankylosis.net and the people living with axSpA in Ukraine.

Wearing traditional Filipino shirts, Clark Ferrer, Percival Escarda and Jose Rivas from Ankylosing Spondylitis Association of the Philippines, presented the work they are doing and the challenges they face working in an archipelago of over 7,000 islands.

Raj Mahapatra, an ASIF Trustee, provided an update on ASIF’s Delay to Diagnosis project, and the project was later the subject of discussion in the workshop sessions. We value the input that we gained and are using it to help direct the next phase of the project.

This year’s World AS Day campaign reached 11.5 million people on social media through ASIF’s channels alone – this doesn’t take into account the numbers reached through our members’ social channels. It is exciting to see how much awareness the campaign is raising each year.

The first insights into the IMAS Global Dataset were presented by Professor Marco Garrido Cumbrera. The data provides a valuable augmentation of the European results.  The data currently being analysed comes from people living with axSpA across five continents and increases the number of respondents to the survey to 5,325.  Since the Council Meeting, the Indian survey has closed with 230 people having participated. The final number of participants globally is 5,555. The results will be analysed and presented later in the year.

Professor Denis Poddubnyy shared the latest updates in Spondyloarthritis, including some of the most recent global research.  We also heard about the ASAS classification criteria for axSpA and new treatment recommendations.  Doctor Victoria Navarro-Compán provided an update on ASAS’ work and collaboration opportunities. There is certainly an appetite to work more closely with ASAS.

Click on the links below to watch their presentations.

Stalo Papamichael from CYLPER the Cyprus League of People with Rheumatism updated on the various activities of the organisation.

Martina Irrang presented the work of DVMB the Deutsche Vereinigung Morbus Bechterew e.V. Bundesverband.

The challenges of reaching patients across Greece was illustrated by Nadia Malliou from ELEANA the Hellenic League Against Rheumatism.

Attendees listened to Dr Dale Webb from NASS present the Gold Standard project. This ambitious project aims to reduce the national delay in diagnosis in the UK from 8.5 years to 1 year.

The Schweizerische Vereinigung Morbus Bechterew in Switzerland was introduced by René Bräm who highlighted his organisation’s pillars and recent activities. He included a photo from one of the first ASIF Council Meetings in 1989.

Moataz Daoud spoke on behalf of the Canadian Spondylitis Association (CSA), sharing their goal for axSpA patients.

Julieth Samantha Buitrago described the reality of the Fundación de Espondilitis Anquilosante en Colombia and generously gave each of the participants a traditional Colombian poncho.

The sessions closed with the words of Zhivko Yankov, from Bulgarian Ankylosing Spondylitis Patient Society and President of ASIF, who shared ASIF’s Strategic Plan for the upcoming five years.

He closed the meeting by thanking all ASIF’s members, for their passion and dedication to improving the lives of all those living with axSpA.

We are stronger when we work together

Look out for our full Council Meeting Report coming soon!

Watch Professor Denis Poddubnyy’s Presentation

Watch Doctor Victoria Navarro-Compán’s Presentation

To view the Member’s Posters click here

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