News from around the word Archives - Page 2 of 3

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.

Bekhterev Norge

Bekhterev Norge was initially funded as a diagnosis specific part of the Norwegian Rheumatology Association (NRF) in 1986. The aim was to increase the focus and awareness on axSpA within the full set of rheumatic diseases. Bekhterev Norge was established as a separate organisation in 2018. Bekhterev Norge is fully independent from the government in Norway, however, as a recognised patient association we receive public funding to be able to act as the voice of patients with our diagnosis.

Living with axSpA

Suffering from a chronic disease such as axSpA is challenging. Since 1986, we have recognised several areas where we can support our community and have focused on two issues:

1. Local activities for our members

Living with a chronic disease increases the risk of worse physical and mental health. It often also results in reduced physical activity. Many people in our patient group are on disability benefits, meaning they have a lower than average income, and they may miss the social connection that a workplace can provide.

Bekhterev Norge addresses these issues by providing customised social and physical activities for people living with axSpA. Bekhterev Norge has six local associations paying attention to local activities. These are in Tromsø, Trondheim, Kristiansund, Bergen, southern part of the Rogaland County and Oslo. Pool training in a warm water pool is the main local activity. In total we offer 18 local training groups!

Bekhterev Norge understands the importance of community and the power of coming together to support one another. Our local associations are committed to creating a welcoming space where members can share their triumphs, setbacks, and experiences, knowing that they are not alone in their journey. Together, Bekhterev Norge and our dedicated volunteers work tirelessly to support, educate, and empower individuals affected by axSpA, driving positive change and fostering a sense of community among those living with this condition.

2. The need for treatment trips abroad

Norway’s varying climate can be tough for those with axSpA. Since the mid 1980, patients have been offered a four-week treatment trip in the southern part of Europe as a supplementary treatment. The combination of active and passive physical treatments, resting, warm and stable climate and self-care, has proven to have a positive impact. Worryingly, the provision of this supplementary treatment is under pressure. Reasons include pressure on the government budget, the Euro exchange rate, general increase in costs and finally, there is a belief that medicine usage is the only effective therapy for people living with axSpA. Several reports have documented the positive effects of treatment trips abroad, both for individual patients and from a wider societal point of view. Bekhterev Norge advocates to healthcare professionals, bureaucrats and politicians to ensure that the supplementary treatment will not only continue but will improve.

Bekhterev Norge advocates for people living with axSpA to have the access to local activities and treatments.You can read more about Bekhterev Norge’s work at bekhterev.no.

Yoga for AS

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.

Watch video

Find out more about Yoga for AS

Your SpAce

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.

Find out more about Your SpAce

Biosimilar Medicines

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.

Axial Spondyloarthritis Association of South Africa wins Award

Maranda van Dam presenting at the congress

The Academic Excellence and Recognition Award was presented to Maranda van Dam, Chair of ASASA during the SARAA Congress 2024.

ASASA won a similar award of excellence at the EULAR PARE (People with Arthritis/Rheumatism across Europe) Congress 2022.

The SARAA award was based on significant advances made by ASAS towards improving the quality of life of people living with axSpA in South Africa, as well as training done to build awareness in the medical fraternity around the condition.

ReumaZorg

The National Association ReumaZorg Nederland is the national Dutch user-led patient organisation, that strives to make a difference in the lives of people with rheumatic and muscular diseases (RMDs).

Having an RMD is a battle against a (lasting) disease, but also against pain, fatigue, loneliness and lack of understanding. Everyday people simply struggle to keep participating: at home, at school and at work.

We work and lobby for an early diagnosis, good healthcare and a healthy active life for people with axSpA. AxSpA mostly affects the spine, causing damage visible on X-ray (ankylosing spondylitis) or damage that doesn’t show up on X-rays (non-radiographic axSpA). Our advocacy aims at supporting people in the best way possible. We want to achieve this together with all people with axSpA and their families, researchers, healthcare providers and other stakeholders who can contribute to this.

As a national patient organisation, RZN is the member of EULAR for PRE for the Netherlands. It is also an associated member of EURORDIS.

Find out more about us at reumazorgnederland.nl

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.

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.