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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DEBRA)
a/k/a: DEBRA
Address
16 East 41st Street
3rd Floor
New York, NY 10017
Phone
212-868-1573
Fax
212-868-9296
800 Number
866-332-7276
TDD
--
Email Address
staff@debra.org
Chapters
8
Website
The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) is a national voluntary health organization dedicated to achieving a cure for epidermolysis bullosa (EB) and improving the care and quality of life for people with this disorder and their families. EB is a group of genetic disorders in which there is a defect causing the skin layers to separate and blister either spontaneously or at the slightest friction. Symptoms usually are apparent at or shortly after birth. The association promotes and supports scientific research on the cause, diagnosis, treatment, and cure of this disorder. DEBRA seeks to meet the unique needs of affected individuals and their families through programs that supply information, assistance, support, and guidance. DEBRA is also committed to raising public awareness about the nature of epidermolysis bullosa and to representing the special concerns of affected individuals and their families to government officials. The organization offers a variety of educational materials.
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