[Not alone with a rare disease. The importance of self-help given by the example of anorectal malformations].
Using the German self-help organization for people with anorectal malformations (SoMA e.V.) as an example, the aim is to illustrate the particular importance of selfhelp groups for rare diseases. First, the structure and work of the German support and advocacy organization are explained by means of a case study. The special benefit for people affected with a rare disease and their relatives, but also for medical practitioners and health insurance funds are highlighted. Synergetic effects by integrating networks are presented. Meanwhile and thanks to globalization and internet, 13 national self-help groups for anorectal malformations and related continence problems are currently in touch. Even today, the fields of activity and the mutual support in coping with the handicap are frequently underestimated. Professional self-help aims to be respected as an equal partner in interdisciplinary health care systems.
Jenetzky
E
E
Universität Heidelberg, Munchen, BRD. info@soma-ev.de
Schwarzer
N
N
D000015:Abnormalities, Multiple / Q000628:therapy*; D001003:Anal Canal / Q000002:abnormalities*; D005242:Fecal Incontinence / Q000534:rehabilitation*; D006801:Humans; D035583:Rare Diseases / Q000534:rehabilitation*; D012007:Rectum / Q000002:abnormalities*; D012657:Self-Help Groups / Q000458:organization & administration*