Patient organizations strengthen support for people with rheumatic diseases

Rheumatic and musculoskeletal diseases (RMD) are chronic, often lifelong conditions. EULAR - The European Alliance of Associations for Rheumatology - works with the network of national organizations of People with Arthritis/Rheumatism in Europe (PARE) to ensure the voices of people with RMD are heard and have influence among decision makers - creating powerful alliances that make a real difference to lives.

Patient organizations are an important supplement to public healthcare services - offering accessible, person-centred support. In a poster view presentation at the EULAR 2026 Congress in London, Nanna Bacci Hartz described professional counselling provided through the Danish Rheumatism Association. This multidisciplinary service consists of a rheumatologist, nurse, occupational therapist, dietary advisor, lawyer, physiotherapists, and social workers. The phone service operates for 27 hours every week, and written requests are answered on a continuous basis. In 2025, there were 5,408 enquiries, 84% of which came in by phone. Most people contacting the service were women (80%), and most were members of the Association. The three most frequent topics were somatic or medical issues, employment-related concerns, and questions about physiotherapy. Unlike traditional healthcare services, the counselling team offers a non-clinical, person-centred setting - without the pressure of clinical decision-making or time constraints. People contacting the service are given sufficient time to express concerns that may extend beyond their medical symptoms, including everyday challenges, work-related issues, and psychosocial worries. In addition to its direct value for patients, the service provides the patient organisation with unique insights into unmet needs and challenges such as medication shortages, hospital-related issues, and administrative or legal barriers. Professional counselling should be recognised as a core component of support within rheumatology care pathways, because being heard matters.

One place where people often feel invisible is during menopause. Recent research has revealed that menopause is not discussed for 93% of respondents with rheumatoid arthritis. But rheumatoid arthritis affects three-times more women than men, so this represents a significant gap in care. The National Rheumatoid Arthritis Society (NRAS) in the United Kingdom initiated a workstream to explore how to address this through patient-led resource development and collaboration. Donagh Stenson outlined how three key initiatives had emerged from this, including a booklet designed to provide accessible information and support for women with rheumatoid arthritis across all stages of menopause. An online support group was also convened, creating a peer-led space to offer emotional support and shared experiences in a safe environment. The third element is Coalition for Menopause - a steering group of rheumatologists, menopause specialists, GPs, pharmacists, nurses, researchers, and service users. The idea is the coalition will guide resource development and generate ideas for research, education, and service improvement. This work marks a significant step forward in holistic care.

Another consideration is work participation across the life course, since RMDs frequently begin in early adulthood. Patient organizations play a key role in supporting policy objectives related to work, social participation, and equality by informing patients about their rights. The Norwegian Rheumatism Association arranged a gathering for 40 people with RMDs aged 18-40 to explore barriers and facilitators to sustainable work participation, and to assess the contribution of peer support and patient-led initiatives in strengthening employability, self-management, and inclusion in people's education and working lives. Joachim Sagen reported that there were multiple barriers to work participation, including fluctuating disease activity, fatigue, and limited workplace knowledge about RMDs. Facilitators included early intervention, flexible and individualised work arrangements, supportive leadership, and increased awareness of rights and responsibilities. Peer support was identified as a central enabling factor, contributing to empowerment, reduced stigma, improved self-efficacy, and enhanced capacity to remain in or return to education and employment. This patient-led initiative highlights the relevance of peer-based and person-centred approaches in promoting sustainable work participation among young adults with an RMD. Aligning healthcare, workplace practices, and social policies with lived experience may strengthen employability and long-term labor market inclusion.

Non-pharmacological interventions are essential components of evidence-based management of RMDs, and are recommended in clinical guidelines. This includes physiotherapy, which can support mobility, pain management, functional capacity, and self-management, but access can be difficult. At the 2026 Congress, results were presented from a patient-led initiative designed to advocate for equitable, needs-based access to physiotherapy for people living with RMD by securing an increase in reimbursed physiotherapy sessions within the public health system in Cyprus. Before this, patients were limited to 9 physiotherapy sessions - regardless of their diagnosis or disease severity. But following the intervention and approval of a new policy, disease-specific entitlements have been introduced, allowing up to 24 reimbursed sessions for rheumatoid arthritis, 12 for fibromyalgia, and 42 sessions for people with spondyloarthritis. This reform has enabled improved access to continuous and individualised physiotherapy, better reflecting clinical needs and patient-reported outcomes. As a result, patients have reported enhanced functional capacity, better mobility, improved symptom management, and greater ability to maintain their independence and participation in daily life. These impressive outcomes highlight the importance of integrating patient perspectives into health policy decisions.

Presenting the work, Stalo Papamichael said "This change confirms physiotherapy as a critical pillar of sustainable, person-centred RMD management. The advocacy model can be adapted by patient organizations in other settings to strengthen access and improve health equity within public health systems".