Selbsthilfeorganisationen für seltene Erkrankungen und Gesundheitsversorgung: Gesundheitspolitische Erwartungen und Selbsthilferealität

Abstract

Health policy expects self-help associations to make contributions to the improvement of the healthcare sector. The pilot study has explored the degree of reality of these expectations in a sample of five self-help organizations in the field of rare diseases. The study reveals that the expectations are fulfilled only in part. Self-help organizations enrich the healthcare sector with two specific qualities: their members operate with the special competencies of affected people and they have established a long-lasting cooperation with voluntary professionals. They are often a great help to the people contacting them directly, but, for a number of reasons, their supporting measures are reaching only a part of all affected people. The activities in the field of social participation have to cope with a lack of proper activists. They are able to pursue single projects successfully, but they are facing great problems in mastering the whole agenda of social participation.