Epidermolysis Bullosa Websites

Offers information, news, newsletters, support, and resources.

Information, mailing list, pictures, and help for new parents.

Features organization background, information about the disorder, fundraising and research details, and news.

A volunteer, nonprofit foundation dedicated to the support of medical research about this disorder. Includes information about research, videos, and organization information.

Includes articles, news, and information about this genetic disorder.

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.

Mailing list support group for parents, patients, and those interested in learning about disease.

The BBC reports on the death of two brothers with ‘butterfly skin’.

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.