The Swedish Information Centre for Rare Diseases

The aim of the information centre is to raise awareness and increase knowledge about rare diseases. In Sweden, the official definition of rare diseases is “disorders resulting in substantial disability and affecting no more than one hundred individuals per million population.”

The Swedish Information Centre for Rare Diseases produces and updates The Swedish Rare Disease Database. Leading experts on each disease provide the information material, which is reviewed by a scientific advisory board before publication. Patient associations and organisations for the disabled are also important partners. The centre is funded by The Swedish Board of Health and Welfare.

The centre also assists in the retrieval of information on rare diseases and mediates contacts with medical experts and patient associations.