[Self-help for a rare, chronic disease].
The existence of support groups is of great interest, especially for individuals affected by a rare, chronic disease. The few affected people means a shortage of specialized physicians. As a result, affected individuals suffer from a great lack of information about their disease. Self-help organizations fill this gap and complement the work of physicians by informing patients, leading them through the health system and offering a partner to talk to. The support group "Society for von Hippel-Lindau (VHL) disease effected families" (Verein für von der von Hippel-Lindau (VHL) Erkrankung betroffene Familien e.V.) puts its main emphasis on general information about the disease. In addition, the association supports the exchange of experience and helps to explain psychologically or socially determined problems associated with the VHL-disease. The foundation of ACHSE (Allianz Chronischer Seltener Erkrankungen, Alliance for Rare, Chronic Diseases)), as the parent organization for the German support groups for individuals affected by a rare disease, has been an important step towards communicating the specific needs of individuals affected by such diseases to the public.
Alsmeier
G
G
Verein für von der Von-Hippel-Lindau-Erkrankung betroffene Familien e.V. , Rembrandt-Strasse 2, 49716, Meppen, Germany. g.alsmeier@hippel-lindau.de
Rath
D
D
D005858:Germany; D006801:Humans; D012657:Self-Help Groups / Q000706:statistics & numerical data; D006623:von Hippel-Lindau Disease / Q000523:psychology / Q000628:therapy