Geoff and Jamie from Yoga for AS have produced a short documentary to show how the practices of yoga can benefit for people living with AS/axSpA.
Jamie commented, “We hope you enjoy the documentary, and it gives you a dose of inspiration, empowerment, and a sense of community. We are all in this together. Please share the video with friends, family, your rheumatologist, physiotherapist, GP, and importantly, anyone affected by this condition.”
Through experience of both living with AS and teaching yoga to hundreds of people with AS, Geoff and Jamie have created an online service providing live classes, video tutorials and one to one coaching.
The National Axial Spondyloarthritis Society (NASS) has launched new resources for people living with axSpA to get the most out of their medical appointments and navigate their care.
Together with people with people living with axSpA and healthcare professionals, they created short information and lived experience videos covering a range of topics in their Your SpAce programme, including:
Pain
Flares
Fatigue
Making medication decisions
Getting the most out of appointments
Advice on activity, exercise, and mental health is woven into all the topics. Alongside the videos, there are downloadable worksheets so people can build a practical toolkit to manage their axSpA and the impact it has on their life. Over 23,000 people have visited Your SpAce since March 2023 and the videos have been viewed over 17,000 times.
The content is free to access on YouTube and the NASS website. Translation is available for the webpages, which includes video transcripts, and auto-translated subtitles are available on the videos. It’s easy to dip in and out of the topics, to access what’s most needed at the time.
Since April 2023, NASS has run free monthly online meeting with over 450 attendees. Attendees are mainly in the UK, but people have joined from the Netherlands, USA, and Australia. The meetings have provided a welcoming community for people to meet other people with axSpA, often for the first time, and share advice with each other.
NASS Programme Manager, Zoë Clark, is presenting the results of Your SpAce at EULAR Congress and is keen to connect with other people who are attending. The session is ‘Exploring self-management: definitions and life’ on Saturday 15 June at 11:45 CEST. Please get in touch with Zoe (zoe@nass.co.uk) if you’re interested in meeting during the conference.
Zoë is happy to speak to patient organisations that are interested in developing similar programmes to Your SpAce and share NASS’ learning and experiences.
AxSpA patients were recently represented at a biosimilar medicines patient leader workshop organised by Medicines for Europe. Rene Anour, Chair of the Biosimilar Medicines Working group at the European Medicines Agency (EMA) and Sarah Ikenberry from the US Food and Drug Administration (FDA) (pictured left) heard from ASIF’s Jo Lowe as she shared her thoughts on what people living with axSpA need to know about biosimilar medications. Both Rene and Sarah play a key role in providing patients with accurate and helpful information about biosimilar treatments.
About 20 patients and patient representatives from different disease areas attended the workshop, along with biosimilar manufactures. They each gave their view on what the most important considerations are when patient information about biosimilar medicines is put together. Opportunities like these are invaluable for ensuring the patient voice is heard by those creating drug-related information for patients. The event took place in Amsterdam on 17 April.
Following the workshop, Jo attended the annual Biosimilar Medicines Conference. The event addressed the main challenges in increasing patient access to biosimilar treatments, including building a European biosimilar strategy and how the impact of new policies can be measured. Sessions were also held on planning for future treatment needs and regulatory policy.
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!
Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders. ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work. IMAS continues to help us understand how we can best support our members and provides us with exciting new opportunities.
The event will take place at the Wiener Rathauskeller from 18:30 to 21:30 on Tuesday 11 June. We will explore the key findings from IMAS and hear the real-life experiences of people who live with axSpA. Dr Victoria Navarro Compán, President Elect of ASAS, will give the Keynote address, alongside presentations by Dr Marco Garrido Cumbrera from the University of Seville, ASIF Trustee Andri Phoka, and our Executive Director, Mike Mandelbaum.
