Patient-led initiatives are reshaping rheumatology care by addressing critical gaps in support, such as menopause management, career sustainability, and equitable access to physiotherapy. According to the European Alliance of Associations for Rheumatology (EULAR), these person-centred models—presented at the EULAR 2026 Congress—demonstrate that integrating lived experience into health policy and clinical practice leads to measurable improvements in patient outcomes and daily functioning.
How multidisciplinary counselling fills gaps in traditional healthcare
Traditional clinical settings often lack the time to address the psychosocial and everyday challenges faced by people with rheumatic and musculoskeletal diseases (RMD). At the EULAR 2026 Congress, Nanna Bacci Hartz of the Danish Rheumatism Association shared insights from a multidisciplinary counselling service that provides non-clinical support. In 2025, this service handled 5,408 enquiries, with 80% of participants being women.
The service operates for 27 hours weekly, offering access to a diverse team including rheumatologists, lawyers, and occupational therapists. By removing the pressure of clinical decision-making, the team allows patients to voice concerns about employment, medication shortages, and administrative barriers. This provides the patient organization with unique, actionable data regarding unmet needs that might otherwise remain invisible to standard healthcare providers.
The Danish Rheumatism Association’s counselling service saw 5,408 enquiries in 2025, with 84% of those requests coming in via telephone.
Addressing the menopause care gap in rheumatoid arthritis
Menopause is a significant, often overlooked challenge for women living with rheumatoid arthritis. Research highlighted by the National Rheumatoid Arthritis Society (NRAS) in the UK revealed that 93% of respondents reported that menopause was never discussed during their rheumatology care, despite the condition affecting three times more women than men.
Donagh Stenson outlined three key initiatives designed to bridge this divide:
- A dedicated booklet offering accessible information for women at all stages of menopause.
- An online peer-led support group to foster emotional safety and shared experiences.
- The Coalition for Menopause, a multidisciplinary steering group of specialists, researchers, and service users aimed at guiding future research and service improvements.
Can peer support improve work participation for young adults?
RMDs often debut in early adulthood, creating long-term challenges for education and career stability. Joachim Sagen of the Norwegian Rheumatism Association reported on a gathering of 40 people with RMDs aged 18–40 to identify barriers to sustainable work. The findings revealed that fluctuating disease activity and fatigue are major hurdles, exacerbated by a lack of workplace knowledge about RMDs.
Peer support emerged as a central facilitator for empowerment and stigma reduction. When healthcare policies align with lived experience—such as providing flexible work arrangements and early intervention—young adults are better equipped to remain in the workforce. This patient-led approach highlights that self-management is not just an individual task but a result of inclusive workplace practices.
Advocating for equitable physiotherapy access
Physiotherapy is a cornerstone of RMD management, yet access is frequently restricted by arbitrary caps. A patient-led initiative in Cyprus successfully advocated for a policy change to replace a flat limit of 9 sessions with disease-specific entitlements. As presented by Stalo Papamichael at the 2026 Congress, patients can now access up to 24 sessions for rheumatoid arthritis, 12 for fibromyalgia, and 42 for spondyloarthritis.
The results of this shift have been significant. Patients reported better mobility, improved symptom management, and enhanced functional capacity. Stalo Papamichael noted, “This change confirms physiotherapy as a critical pillar of sustainable, person-centred RMD management.”
Frequently Asked Questions
What is the primary role of patient organizations in RMD care?
According to EULAR, these organizations act as a vital supplement to public healthcare by providing person-centred support, advocating for policy changes, and identifying unmet needs through lived experience.
How does peer support benefit young adults with RMDs?
Peer support initiatives, such as those organized by the Norwegian Rheumatism Association, help reduce stigma, improve self-efficacy, and provide practical strategies for managing fatigue and disease activity in the workplace.
Why is the Coalition for Menopause important?
It creates a dedicated space for specialists and patients to collaborate on resource development, filling a significant care gap where 93% of women with rheumatoid arthritis previously felt their menopausal concerns were unaddressed.
Are you a patient or healthcare professional interested in patient-led advocacy? Explore more resources on the EULAR website or subscribe to our newsletter for the latest updates on rheumatology policy and research.