Self-help for rare diseases

PubMed, the Internet portal of biomedical and life sciences literature, indexed an interesting article, entitled “Self-help for a rare, chronic disease.” (Ophthalmologe. 2007 Jan 18). Authors are Alsmeier G and Rath D, Verein fur von der Von-Hippel-Lindau-Erkrankung betroffene Familien e.V. , Rembrandt-Strasse 2, Meppen, Deutschland. 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” 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. To access the full abstract of the article, click here.