Dystrophic Epidermolysis Bullosa Research Association of America (D.E.B.R.A.)DEBRA's mission is to raise funds to encourage and support research into the causes, treatment and cure of Epidermolysis Bullosa and other genetic disorders of the skin, promote education and advocacy, and to provide support and services to people with EB and their families by assisting them in finding medical, social, and genetic counseling.
5 West 36th Street, Room 404
New York, N.Y. 10018
They have local chapters, and a listing of these may be found in their newsletter. They will give assistance to persons wishing to form a support group in their locality. DEBRA provides parent-to-parent matching through their Peer-To-Peer counseling network, and offer a Pen Pal program for adults and children.
DEBRA publishes two quarterly newsletters,EB Currents, and EB Reporter, both are included in membership fees. They also have a pamphlet,"Hope Through Research," and booklets, "Living with Epidermolysis Bullosa," and "Coping with Epidermolysis Bullosa in the Classroom." DEBRA offers a new parent packet that includes information on EB, pamphlets, and a questionnaire. There are books for distribution and videotapes available. Call or write for further information and an order form.
The Association collects information on physicians and researchers who treat/study the condition and disseminate this information to its members. They will provide referrals to other resources and providers. Additionally they host a bi-annual family conference. Call for further information.
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