The Icelandic League Against Rheumatism: A Unified Voice in a Small Nation

Hrönn Stefánsdóttir

In a country like Iceland, with a population of just under 400,000 people, it is neither practical nor sustainable to establish separate organisations for each rheumatic disease. Instead, The Icelandic League Against Rheumatism operates as an umbrella organisation for all rheumatic and musculoskeletal diseases, including axial spondyloarthritis and other inflammatory conditions.

Within the League, each diagnosis has its own dedicated subgroup. These subgroups function independently while benefiting from the structure, resources, and protection of the larger organisation. This model allows us to combine strength with specialisation: we maintain disease-specific focus while speaking with a unified and stronger voice.

Being one organisation significantly increases our influence when advocating for patients. It enables us to apply greater pressure on policymakers and healthcare authorities to ensure that services for people living with inflammatory rheumatic diseases, such as axSpA, are as effective and accessible as possible.

Our work extends beyond advocacy. We are deeply committed to education, prevention, and improving the quality of life. At our headquarters, we provide facilities for physiotherapy and occupational therapy, as well as a small hall used for exercise classes, meetings, and community gathering

physiotherapist stretching a person's leg

We currently have one physiotherapist specialising in rheumatic and inflammatory spinal diseases, alongside three occupational therapists. Their work goes beyond physical support: they assist individuals with daily functioning, adaptive techniques, assistive devices, and address the psychological challenges of living with chronic illness. They also lead group sessions focusing on hand mobility and strength, including therapeutic exercise and wax treatments.

In addition, we collaborate with a social worker who provides essential guidance on patients’ rights and access to services. A part-time exercise specialist offers group sessions such as myofascial release, with particular attention to lower limb pain, an issue many of our members face.

Peer support is a cornerstone of our work. We run support groups for most diagnostic categories, combining in-person meetings with closed online communities. These private Facebook groups are limited to individuals living with the specific condition and provide a safe space for discussion, knowledge sharing, and mutual support. Regular meetings are also held at our facilities.

Approximately 18 months ago, we moved into a new building designed with accessibility as a guiding principle. Every aspect of the space was developed with the needs of people living with inflammatory conditions in mind, and we are very proud of what we have created.

However, being a small nation also presents challenges. Our patient groups are relatively small, and Iceland has only one hospital with a specialised rheumatology department. Access to care can be difficult, especially for those living outside the capital area, as distances, while modest geographically, are significant relative to population distribution.

We also face a shortage of rheumatologists and a lack of high-quality, reliable information in Icelandic about diseases such as axial spondyloarthritis. This makes international collaboration not just valuable, but essential.

For this reason, our membership in ASIF is incredibly important to us. It allows us to stay informed about global developments in treatment and care, helping us ensure that people in Iceland receive the best possible support. It also provides access to trusted information that we can translate and adapt for our local community.

At the same time, we hope to contribute our own experience, particularly in how to build and sustain peer support networks in a geographically dispersed population. Through the use of digital tools, such as streaming events, we are able to connect individuals living in remote areas with activities and communities based in the capital region.

In a small country, collaboration is not just beneficial—it is necessary. By working together nationally and internationally, we can continue to improve the lives of people living with rheumatic diseases.

Find out more about the Iceland League Against Rhuematism

The Icelandic League Against Rheumatism: A Unified Voice in a Small Nation

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