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Conditions and Diseases
Health: Conditions and Diseases: Genetic Disorders
- Dystrophic Epidermolysis Bullosa Research Association. A voluntary, non-profit organization dedicated to creating awareness and providing support for families affected by Epidermolysis Bullosa (EB). Includes treatment and care information, latest research, organization history, and forums.
Cristina's Castle in the Clouds
- Information and support for those interested in a skin disorder called epidermolysis bullosa. Message board and also a list of camps for children with this disorder.
- Includes articles, news, and information about this genetic disorder.
DebRA of America
- Offers information, news, newsletters, support, and resources.
- Features organization background, information about the disorder, fundraising and research details, and news.
EB Info World
- Information, mailing list, pictures, and help for new parents.
EB Medical Research Foundation
- A volunteer, nonprofit foundation dedicated to the support of medical research about this disorder. Includes information about research, videos, and organization information.
Epidermolysis Bullosa - Through the Eyes of a Patient
- A young woman presents medical information, research updates, photographs, recipes, and support group listings, as well as her own experiences with the condition.
International EB Forum
- Includes downloadable articles and booklets as well as links of interest. Also offers password-protected forums for professionals.
Yahoo! Groups: EBworld
- Mailing list support group for parents, patients, and those interested in learning about disease.
The girl whose skin never heals
- The BBC reports on Sohana Collins, who has never known a day without pain. She has a rare genetic disorder that means her skin, internal and external, blisters and tears at the slightest friction. (November 29, 2013)
‘Butterfly’ Churchill brothers die of infections
- The BBC reports on the death of two brothers with ‘butterfly skin’. (March 18, 2013)
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