Epidermolysis Bullosa is a genetic disorder characterized by a fragility of the epidermis or skin, causing blistering, scarring, and sometimes death.
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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.
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.
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)