The Finnish Rheumatism Association organises various national events, experiences, campaigns and training courses for associations, members and the public. We operate mainly in Finnish and Swedish.
Short presentation: Families in the Finnish Rheumatism Associaton
Activities for people suffering from rare rheumatic diseases
A disease is characterised as rare if at most five people in 10,000 suffer from it. In Finland (5.3 million inhabitants), this means max. 2,700 people. In addition, the disease needs to be an inconvenience, not merely “exotic”.
The activities of the Finnish Rheumatism Association cover close to 40 rare diseases, of which the group of people suffering from lupus (SLE) is the largest. Smaller groups only include at most a few dozens of people with rare diseases. For example, it is estimated that 30–50 people suffer from relapsing polychondritis in Finland. Schnitzler syndrome is so rare that, so far, we have not been able to identify any people suffering from it.
Most diagnoses of rare diseases covered by the Finnish Rheumatism Association involve autoimmune diseases, where the body's immune system turns against itself instead of protecting the body from external threats. This leads to infections and possible damage to various tissues. Depending on the disease, there may be damage to connective or cartilage tissue, blood vessels or muscles. It is typical of these diseases that symptoms often appear extensively around the body and that there can be multiple symptoms. Previously, many of these diseases led to severe organ complications for instance in the kidneys or heart and could even be life-threatening. Thanks to advanced diagnostics and care, treatment can nowadays be initiated in mosta cases before any severe symptoms appear.