Social profiles - a dialogue tool

Rare disease patients and their families often navigate in unknown territory. Even if medical guidelines for their disease exist, they normally do not mention social and educational matters and the public services in these areas are often inadequate. Because the disease is rare, social workers, teachers and care takers have no knowledge of the consequences and necessary support. Rare Disorders Denmark has developed a tool, Social Profiles, for the dialogue between the rare disease patients and professionals, that gives a short description of the diagnosis and its characteristics in lay terms provides a check list for relevant support in a life time perspective, for instance: