[Development of disease-specific patient groups within Pro Retina]

The formation, development and external impact of the following eight disease-specific patient groups with rare forms of retinal degeneration (RRD) within the patient organization Pro Retina are described: Gyrate Atrophy, Bardet-Biedl Syndrome (BBS), Adult Refsum's Disease, Usher Syndrome, Rod-Cone Dystrophy, Leber's Congenital Amaurosis, Choroideremia and Stargardt Disease/juvenile macular degeneration. Within the project sponsored by the German Ministry of Health (BMG) approaches of patient self-help for an adequate organization and interaction with the professional medical care system were supported, analyzed and documented. In syndromic RRD a relatively high proportion of patients are organized in patient groups (Refsum's disease 25%, BBS 14%, Usher Syndrome 8%). Patients with syndromic RRD are more highly motivated to contribute to self-help work than patients with non-syndromic RRD. At the same time, these patients are more dependent on the support from their relatives and on technical aids. The following tendencies in the development of RRD groups were observed: increasing focus on one patient organization (PRO RETINA Deutschland, Self-Help Organisation of People with Retinal Degenerations) all RRD groups in Pro Retina grew; RRD groups became increasingly independent within Pro Retina; external activities of the groups showed considerable increase. Stable work relationships with scientific and medical care institutions have been established. The example of RRD demonstrates how rare and isolated patients receive basic coping support by self-help groups, how they deal with resources in a collective way and how they can interact with the medical care system.