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Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA.  The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with symptoms get an accurate diagnosis with minimal delay and the ongoing support and care they need.   

Webinar, 13 March

To showcase the report and discuss what the evidence and calls to action mean for patients and patient organisations, we are holding a webinar on 13 March (12:00 to 13:30 GMT).  As well as highlighting some of the key results from the report, we will hear clinician and patient organisation perspectives on how IMAS can be used as a tool for change.  Please email Jo Lowe to confirm your attendance. 

Spotlight on IMAS event, 11 June

A celebratory event will take place in Vienna, the evening before the EULAR congress commences. The event, on Tuesday 11 June (18:30-21:30 CET), will bring together our members, industry partners, rheumatologists, HCPs, and other key stakeholders.  It will be an opportunity to celebrate the success of IMAS so far, its transition to ASIF and the patient community; and to share our plans for the future. Please contact Jo Lowe to secure your place.  

 

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.

Read more about ASASA

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

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.

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.

Written by Muhammad A. Khan, MD, FRCP, MACP, Professor Emeritus of Medicine, Case Western Reserve School of Medicine, USA

This year marks the 50th anniversary of the groundbreaking discovery linking HLA-B27 to ankylosing spondylitis (AS)[1,2]. Beyond HLA-B27, over 116 additional recognised genetic risk factors have been identified, while exploration of environmental factors in this context remains limited [1,2]. Notably, HLA-B27(+) AS patients exhibit a distinct clone of potentially autoreactive (self-reactive) CD8+ T cells with TRBV9-containing T cell receptors (TCR) in their bloodstream and within inflamed tissues [2-4]. 

Figure 1 elucidates the persistence of autoreactive CD8+ T cells that manage to evade elimination in the thymus during early life. This phenomenon is observed in individuals born with the disease-predisposing HLA-B27 subtype (HLA-B27:05) but not in those born with the non-disease-predisposing subtype (HLA-B27:09) [3]. The proposed mechanism involves clonal expansion of these T cells upon exposure to microbial-derived peptides, followed by cross-reactivity with self-derived peptides. This cascade triggers an autoimmune inflammatory process, ultimately in AS in individuals with the disease-predisposing subtypes of HLA-B27 [3].  

A recent outstanding study from a year ago has effectively unravelled the 50-year-old puzzle surrounding HLA-B27’s role in AS [5]. This breakthrough has notably expedited the potential for targeting and eliminating disease-causing T cells, offering promising prospects for curing those affected [5]. 

A subsequent groundbreaking paper, published a month ago, highlights the success of targeted elimination of the disease-causing TRBV9+ T cells in an HLA-B27(+) patient with AS [6]. After successful testing in nonhuman primate models, the authors observed a dramatic efficacy in elimination of these T cells in AS. The patient achieved remission within 3 months, discontinuing anti-TNF therapy used for 5 years. Complete remission has now persisted for 4 years, with three annual doses of anti-TRBV9 treatment [6]. 

The authors aptly concluded that the selective depletion of a TRBV9-defined group of T cells presents a promising avenue for safe and effective therapies in AS. This innovative approach may extend to other HLA-B27-associated forms of spondyloarthritis [6]. Targeted elimination of the disease’s root cause, without resorting to systemic immunosuppression, holds the potential for a new era of safe and efficient autoimmune therapies.

These pivotal advancements not only signify a paradigm shift but also enhance the prospect of preventing the disease in individuals with high-genetic risk factors [5,6]. Furthermore, the discovery of enhanced biomarkers, coupled with the evolving technology of electric field molecular fingerprinting, holds promise for significantly improving early diagnosis and facilitating the initiation of curative treatments [2]. 

REFERENCES:

1. 1. Braun J, Sieper J. Fifty years after the discovery of the association of HLA B27 with ankylosing spondylitis. RMD Open. 2023 Aug;9(3):e003102. doi: 10.1136/rmdopen-2023-003102. 
   2. Khan MA. HLA-B*27 and ankylosing spondylitis: 50 years of insights and discoveries. Curr Rheumatol Rep. 2023. doi: 10.1007/s11926-023-01118-5. 
   3. Khan MA, Mathieu A, Sorrentino R, Akkoc N. The pathogenetic role of HLA-B27 and its subtypes. Autoimmun Rev. 2007;6(3):183-9. doi: 10.1016/j.autrev.2006.11.003.
   4. Garrido-Mesa J, Brown MA. T cell Repertoire Profiling and the Mechanism by which HLA-B27 Causes Ankylosing Spondylitis. Curr Rheumatol Rep. 2022 Dec;24(12):398-410. doi: 10.1007/s11926-022-01090-6. 
   5. Yang X, Garner LI, Zvyagin IV, Paley MA, Komech EA, Jude KM, et al. Autoimmunity-associated T cell receptors recognize HLA-B*27-bound peptides. Nature. 2022;612(7941):771-7. doi: 10.1038/s41586-022-05501-7. 
   6. Britanova OV, Lupyr KR, Staroverov DB, Shagina IA, Somov DV, Klimenko A, et al. Targeted depletion of TRBV9+ T cells as immunotherapy in a patient with ankylosing spondylitis. Nat Med. Oct 23; 2023. doi: 10.1038/s41591-023-02613-z. 

 

ID:  http://orcid.org/0000-0003-4704-8311  

Correspondence: m.asimkhan@gmail.com

Website: WWW.HLAB27.COM 

 

ASIF Members from around the world will gather in Columbia in October for our annual Council Meeting.

IMAS will feature as a central theme throughout the meeting. Presentations, discussions and workshops will include raising awareness among healthcare professionals, emerging therapies and research, and how our members can use IMAS to facilitate their work. One of the most anticipated sessions will be an opportunity for our members to present their organisations, campaigns and work. Importantly, delegates will have time to network, share ideas, build new relationships and create opportunities for collaboration.

Invitations have been sent and we look forward to assisting delegates with their attendance. Please contact Jo Davies (office@asif.info) with questions about the Council Meeting.

 

ASIF is delighted to offer our members the opportunity to apply for a £500 World AS Day (WASD) Social Media Grant. The grant is to be used exclusively for boosting WASD social media posts and ads.  

In previous years ASIF has boosted WASD posts to countries where our members operate, however the posts have linked back to our website. We believe it would be more beneficial to people living with axSpA in those countries if the content was boosted on our members’ channels and linked directly to their websites. 

We understand that many of our members do not have the funding available for social media. We hope these six £500 grants enable members to raise awareness with more people during the WASD campaign period.   

Over recent years the algorithms used by the main social media platforms (Facebook, Instagram, X (formally Twitter) and Linked In) have made it increasingly difficult to reach significant numbers of people through organic (non-boosted) posts. Paid campaigns ensure that content is seen by more people and can be targeted to specific audiences.   

Eligibility: The organisation must be a member of ASIF. 

Number of grants available: 6 

Support: ASIF will run a webinar demonstrating how to boost posts and create ads, and use analytics to measure performance. It will also cover how to target specific audiences across each of the social media platforms listed above. All members are welcome to attend the webinar, regardless of whether they are a grant recipient or not. 

We understand that managing social media can feel overwhelming with all the different platforms and options, which is why we can arrange additional one-to-one or small-group sessions following the webinar. 

Post-WASD: It is a condition of the grant that the recipient provides feedback on the results of the boosting/ad campaign in terms of number of people reached and engagement levels etc. Details of the information required will be provided to the grant recipient prior to WASD. The report is not intended to be onerous, it will simply provide important feedback on the success of the campaign. This feedback will help to create a picture of the global impact WASD has and will help inform the decision to provide future grants.

Deadline for the Post-WASD Report: 8 June 2024

Application deadline: 10 January 2024 

For more information or to arrange a short video call before applying please contact us. 

Obligations of grant recipient: 

• When confirmation of the grant is provided to the organisation:
  • Sign the agreement
  • Provide bank account details

The grant recipient agrees to:

• Spend the grant exclusively on paid social media – the grant must not be spent on staffing or other costs
• By 8 June 2024: 
  • To complete the evaluation form provided by ASIF, detailing how the grant was spent and its impact  
  • To provide receipts to evidence the spend 
  • To return any unused portion of the grant to ASIF 

Decision Making Process

Applications will be considered by the ASIF team and endorsed by the Trustee Board, who work to the Charity Commission C27 guidelines on trustee decision making.

Grants are awarded entirely at the discretion of the trustees and their decision is final.

Criteria

The Trustees will consider the applications based on: 

• Size of organisation (preference will be given to organisations with limited financial resources)
• Current social media presence (preference will be given to organisations that have an existing social media presence – even if it is small)
• The response in the application form to the question: How would your organisation use the grant to boost your social media activity in support of the World AS Day campaign?

Successful applicants will be informed by 31 January. 

It was great to see so many of our members and industry partners at our World AS Day Webinar on 6 February. If you missed it, you can watch the recording here. During the webinar, we explored the social media campaign, demonstrated how the social media assets can be tailored to local audiences, and previewed the animations.

The social media content calendar has now been added to the Toolkit. All the materials are available to download from the webpage.

Tell us about your event! Complete the online form and we’ll add your event to the World AS Day webpage and post about it on our social media channels.

 

Did you know we have a set of three new infographics, which help to support people living with axSpA?  The resources aim to inform people how disease activity is typically measured; support them in building a partnership with their doctor; and assist them in focussing on their personal and lifestyle goals.

The first of these is an infographic that helps to educate patients on the commonly-used disease activity assessments, ASDAS and BASDAI.  As well as the tools themselves and the interpretation of the different scores, it also describes how inflammation is measured. 

Recognising that disease activity scores often do not tell the full story, the second resource provides guidance on discussing other measures of wellbeing with doctors.  It provides helpful tips on other areas of life that could be useful to talk about.

The third resource gives advice and support on setting personal goals.  It provides guidance on how to consider, set and monitor lifestyle goals that can help to motivate and bring meaningful improvements to wellbeing and quality of life.

The set of infographics have been developed to encourage people and give them more confidence in discussing their disease with their doctor.  You may also find that they are a useful resource for the rheumatologists in your network to give to their patients.  Please let us know if you think healthcare professionals would find them useful or if you decide to share them in this way.

There is an opportunity to translate the infographics for our members; please contact Jo Lowe (projectmanager@asif.info) to find out more. 

Mike Mandelbaum and Jo Davies from ASIF attended the EULAR PARE 2023 Conference in Brussels on 16 and 17 November.  This year’s conference was mostly about implementing the EULAR Manifesto Campaign, an advocacy campaign outlining RMD-related policy asks. The manifesto focuses on influencing three policy areas:

Quality of care: improving RMD prevention, early diagnosis, treatment, and rehabilitation interventions.

Social Policy: mitigating the burden of RMDs on health-related quality of life, education, and employment.

Research and innovation: developing better RMD prevention and treatment strategies.

You can find out more about the EULAR Mainfesto at www.eular.org/eular-manifesto. 

The campaign is largely focussed right now on influencing European Parliament. However, the manifesto will have resonance with all of us and it is a document that could be adapted to suit other countries.

Everyone who attended EULAR PARE also took part in the Best Practice Fair. Forty posters were presented; Mike presented an ASIF poster on IMAS (pictured above). It was wonderful to see the work that other organisations are doing. There were a number of ASIF members at the event.