Patient organizations strengthen support for people with rheumatic diseases
Patient-led initiatives are transforming care for rheumatic and musculoskeletal diseases (RMD), as highlighted at the EULAR 2026 Congress in London. From expanding physiotherapy access in Cyprus to addressing menopause gaps in the UK and professional counselling in Denmark, these efforts aim to integrate lived experience into health policy and clinical pathways.
How is professional counselling improving RMD care in Denmark?
Nanna Bacci Hartz presented findings on a multidisciplinary counselling service provided by the Danish Rheumatism Association. The team includes a rheumatologist, nurse, occupational therapist, dietary advisor, lawyer, physiotherapists, and social workers.
The service provides a non-clinical, person-centred environment where patients can discuss concerns beyond medical symptoms. This includes psychosocial worries, everyday challenges, and work-related issues without the pressure of clinical decision-making.
In 2025, the service handled 5,408 enquiries, with 84% arriving via phone. Women made up 80% of those contacting the service, focusing primarily on medical issues, employment concerns, and physiotherapy questions.
Why is menopause support critical for rheumatoid arthritis patients?
A significant gap in care exists for women with rheumatoid arthritis, a condition that affects three times more women than men. Recent research indicates that menopause is not discussed for 93% of respondents with the disease.
To address this, the National Rheumatoid Arthritis Society (NRAS) in the United Kingdom launched a workstream for patient-led resource development. Donagh Stenson outlined three key initiatives: a support booklet for all menopause stages, a peer-led online support group, and the Coalition for Menopause.
The Coalition for Menopause serves as a steering group comprising nurses, GPs, pharmacists, researchers, menopause specialists, rheumatologists, and service users. This group may guide future research, education, and service improvements.
What helps young adults with RMD stay in the workforce?
Because RMDs often begin in early adulthood, work participation is a primary concern. The Norwegian Rheumatism Association studied 40 individuals aged 18-40 to identify factors that influence sustainable employment.
Joachim Sagen reported that fatigue, fluctuating disease activity, and a lack of workplace knowledge about RMDs act as significant barriers. Conversely, supportive leadership, flexible work arrangements, and early intervention help patients remain employed.
Peer support was identified as a central factor in reducing stigma and improving self-efficacy. Aligning social policies and workplace practices with these lived experiences could strengthen long-term labor market inclusion.
How did patient advocacy change physiotherapy access in Cyprus?
Non-pharmacological interventions like physiotherapy are recommended in clinical guidelines, yet access is often limited. Stalo Papamichael presented a patient-led initiative in Cyprus that successfully challenged a rigid reimbursement policy.
Previously, the public health system limited all patients to nine physiotherapy sessions, regardless of severity. Following the advocacy effort, a new policy introduced disease-specific entitlements.
Patients with spondyloarthritis can now receive up to 42 reimbursed sessions, while those with rheumatoid arthritis can access 24 and those with fibromyalgia can access 12. Patients reported better mobility, enhanced functional capacity, and a greater ability to maintain independence.
Papamichael stated that this advocacy model could be adapted by other patient organizations to improve health equity within public health systems.
Frequently Asked Questions
What are the main barriers to employment for young adults with RMD?
According to Joachim Sagen, the primary barriers include fatigue, fluctuating disease activity, and limited knowledge about RMDs within the workplace.
How has physiotherapy reimbursement changed in Cyprus?
The system moved from a flat limit of nine sessions for all patients to disease-specific limits: 42 sessions for spondyloarthritis, 24 for rheumatoid arthritis, and 12 for fibromyalgia.
What is the purpose of the Coalition for Menopause?
It is a steering group of medical specialists and service users designed to guide resource development and generate ideas for research and education regarding women with rheumatoid arthritis.
How could integrating patient-led advocacy change the healthcare experience in your own community?