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In medicine (dermatology) Epidermolysis bullosa (EB) is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. This condition is not contagious. The condition was brought to public attention in the UK through the Channel 4 documentary The Boy Whose Skin Fell Off, chronicling the life and death of English sufferer Jonny Kennedy.

Forms


There are three main forms of inherited EB. These different subtypes are defined by the depth of blister location within the skin layers, and the location of the dissolution of the skin.

EB Simplex (EBS) -- ABOVE the basement membrane

Blister formation of EB simplex is within the basal keratinocyte of the epidermis. Sometimes EB simplex is called epidermolytic. There are four subtypes of EBS:

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DebRA International - 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.
Meta Description: [ A site full of fun, fantasy and LOTS of info about the skin disorder Epidermolysis Bullosa. ]

DebRA Australia, Queensland Branch - Features disorder information, organization background, publications, photo gallery, and information about the NSW branch.
Meta Description: [ Debra Queensland, Australia Dystrophic Epidermolysis Bullosa Research Association, what is Epidermolysis Bullosa, ]

500 DebRA Canada - Includes articles, news, and information about this genetic disorder.

DebRA of America - Offers information, news, newsletters, support, and resources.

DebRA UK - Features organization background, information about the disorder, fundraising and research details, and news.
Meta Description: [ Welcome to DebRA Online ]

EB Info World - Information, mailing list, pictures, and help for new parents.
Meta Description: [ the mother of a child with a dreadful and devastating genetic skin disorder called epidermolysis bullosa eb recessive dystrophic hallopeau siemensoffers not only advice and help in taking care of these babies and children but also has pages that show pictures of the children, memorials along with... ]

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.

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.
Meta Description: [ EBworld: EB Info World Awareness Group ]

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