The Apeced and Addison patient association of Finland was established in the early 1990s, first as a ”social group” for APECED patients but since September 1995 as a registered association. Somewhat later, the association started to accept also patients with Addison´s disease, either solitary or linked to other components of APS2 as members. The association has currently over 300 members, mostly patients but also some relatives. About 15 % of the members (about 20% of the patiens) are APECED patients.
The main tasks of the association is to form a link between its members, to foster and arrange peer-support, to arrange training in patient care for parents of young patients and to work with other national and international organization in the field. The association is also an interest group that brings the cause and problems of its members to the authorities. Especially important task presently is to get the society and the medical profession to be aware of the problems that face patients with a “rare disease”. The association, jointly with other patient-association of rare diseases has brought up the motion that each of the five University Hospital Districts in Finland has to organize special centres for the diagnosis and treatment of rare diseases.
The Apeced and Addison association has been especially active in supporting and driving scientific studies and research on the area of its members. The association, through the voluntary participation of its members in several scientific projects, has thus had a role in several important medical discoveries, such as the characterisation of the steroidogenic enzymes as key antigen targets in the autoimmune response to adrenal gland in Addison´s disease and in the discovery of the AIRE gene, mutated in APECED.