Rheumatic and musculoskeletal diseases (RMDs) are chronic and often lifelong conditions. EULAR (Union of European Rheumatology Societies) is working with the European Network of Arthritis/Rheumatology Patients’ National Organizations (PARE) to ensure the voices of RMD patients are heard and influence decision-makers, building a powerful alliance that brings real change to lives.
Patient organizations are an important complement to public health services, providing accessible, person-centred support. In a poster view presentation at the EULAR 2026 Congress in London, Nanna Bacci Hartz explained the specialized counseling offered through the Danish Rheumatism Society. This multidisciplinary service is comprised of rheumatologists, nurses, occupational therapists, dietary advisors, lawyers, physical therapists and social workers. Telephone service is available 27 hours a week, and written requests will be answered on an ongoing basis. In 2025, there were 5,408 inquiries, 84% of which were made by phone. Most people who contacted the service were women (80%), and most were members of the association. The three most frequently asked topics were questions about physical or medical issues, employment-related concerns, and physical therapy. Unlike traditional medical services, counseling teams provide a non-clinical, person-centered environment without the pressure of clinical decision-making or time constraints. People who contact the service are given ample time to express concerns that may extend beyond medical symptoms, including everyday problems, work-related issues, and psychosocial concerns. In addition to direct value to patients, this service provides patient organizations with unique insights into unmet needs and challenges, such as drug shortages, hospital-related issues, and administrative or legal barriers. Professional counseling should be recognized as a core element of support in the rheumatology treatment process, as it is important to be heard.
One place where people often feel invisible is during menopause. A recent study found that 93% of respondents with rheumatoid arthritis did not discuss menopause. However, this represents a major gap in treatment, as rheumatoid arthritis affects three times more women than men. The UK’s National Rheumatoid Arthritis Society (NRAS) has launched a workstream to explore ways to address this issue through patient-led resource development and collaboration. Donner Stenson outlined how this has led to three important initiatives, including a booklet designed to provide accessible information and support to women with rheumatoid arthritis across all stages of menopause. Online support groups were also convened to create peer-led spaces to provide emotional support and shared experiences in a safe environment. The third element is the Coalition for Menopause, a steering group comprised of rheumatologists, menopause specialists, general practitioners, pharmacists, nurses, researchers and service users. The idea is that this coalition will guide resource development and generate ideas for research, education and service improvement. This research represents an important advance in holistic care.
Another consideration is labor force participation across the life course, as RMD often begins in early adulthood. Patient organizations play an important role in supporting policy goals regarding work, social participation and equality by informing patients about their rights. The Norwegian Rheumatism Association organized a gathering of 40 RMD patients aged 18-40 to explore barriers and facilitators to sustainable workforce participation and assess the contribution of peer support and patient-led initiatives in enhancing employability, self-management, and inclusion in people’s education and working lives. Joachim Sagen reported multiple barriers to participation at work, including fluctuations in disease activity, fatigue, and lack of workplace knowledge about RMDs. Facilitators include early intervention, flexible and individualized work arrangements, supportive leadership, and increased awareness of rights and responsibilities. Peer support was identified as a core enabler that contributes to empowerment, reducing stigma, increasing self-efficacy, and increasing the ability to remain in or return to education or employment. This patient-led initiative highlights the relevance of peer-based and person-centered approaches in promoting sustainable workforce participation for young people with RMD. Aligning healthcare, workplace practices, and social policies with lived experience can enhance employability and long-term labor market inclusion.
Non-pharmacological interventions are an essential component of evidence-based RMD management and are recommended in clinical guidelines. This includes physical therapy, which can support mobility, pain management, functional ability, and self-care, but can be difficult to access. The 2026 Congress presented the results of a patient-led initiative aimed at advocating for fair and needs-based access to physiotherapy for people living with RMD by ensuring an increase in reimbursed physiotherapy sessions within the Cypriot public health system. Previously, patients were limited to nine physical therapy sessions, regardless of diagnosis or severity of illness. However, following new policy interventions and approvals, disease-specific eligibility was introduced, allowing up to 24 reimbursement sessions for rheumatoid arthritis, 12 for fibromyalgia, and 42 for spondyloarthritis. This reform has improved access to continuous, individualized physical therapy and better reflects clinical needs and patient-reported outcomes. As a result, patients report increased functional capacity, increased mobility, improved symptom management, and increased ability to maintain independence and participation in daily life. These impressive results highlight the importance of incorporating patient perspectives in health policy decisions.
Staro Papamichael, who presented the work, said:This change confirms that physical therapy is a key pillar of sustainable person-centered RMD management. This advocacy model can be applied by patient organizations in other settings to strengthen access and improve health equity within public health systems.”.
sauce:
European Union of Rheumatology Associations, EULAR
References:
- Hearts NB. It’s important to be heard: The value of multidisciplinary professional counseling for people with rheumatic and musculoskeletal conditions. Presented at EULAR 2026. POS0654-Pare. Ann Rheumdis 2026; DOI: 10.1136/annrheumdis-2026-eular.D.125.
- Stenson D et al. Bridging the gap: co-designing menopausal support for women with rheumatoid arthritis. Presented at EULAR 2026. POS0005-Pare. Ann Rheum Dis 2026; DOI: 10.1136/annrheumdis-2026-eular.D.89.
- Sagen J et al. Supporting sustainable workforce participation for young people with rheumatic and musculoskeletal diseases: A patient-led initiative aligned with inclusive working life policies. Presented at EULAR 2026. POS0245-Pare. Ann Rheumdis 2026; DOI: 10.1136/annrheumdis-2026-eular.D.65.
- Papamichael S. Increasing access to the general health care system for physical therapy treatment for patients with RMD. Presented at EULAR 2026. OP0250-Pare. Ann Rheumdis 2026; DOI: 10.1136/annrheumdis-2026-eular.D.81.
