The mission of DebRA is to find a cure for Epidermolysis Bullosa and to improve the health and well being of all individuals and families in the world affected by all forms of the disorder.

Description and/or History:
Debra of America is the only national non-profit organization dedicated to research and direct services for Epidermolysis Bullosa (EB). EB is a painful disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Children born with EB are often referred to as “butterfly children” because their skin is as fragile as a butterflies wings. Today there is no cure and the only treatment for butterfly children is wound care and bandaging. Caring for open wounds through bandaging and avoiding infection is a painful, daily struggle for those living with EB.

Debra of America offers a variety of support to these families through programs and services.

Debra was founded in 1979 by Arlene Pessar, R.N., whose child was born with EB. She began by sending letters to nursing journals asking for information about EB. With the information she gathered, the first fact sheet was published. The first newsletter reached approximately 100 families - today’s goes out to 8,000.

Contact people:

Jepi Rios, Development Associate, (212) 868-1753, (email) Pennie Cannon, Executive Assistant, (212) 868-1753, (email)

Address:

16 East 41st Street 3rd Floor Bronx, NY 10017 (See a map)

Directions:

We are conveniently located by Grand Central. Exit near intersection of E 42nd St and Madison Ave. Walk south on Madison avenue toward East 41st Street.   Nearest Metro/Subway Stop: Grand Central,   Walk distance (in minutes): 3   Nearest Bus Stop: East 42nd Street, 3 minute walk