organizations

** UPDATED 6/3/08**

EB Organizations Across the Country and Around the World

Dystropic Epidermolysis Bullosa Research of America: the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa and providing information and support for people with EB and their families

Epidermolysis Bullosa Medical Research Foundation:The EBMRF is a volunteer nonprofit foundation dedicated to the support of medical research of Epidermolysis Bullosa (EB), its causes, the development of successful treatments, and ultimately, its cure

United Suvivors with EB: Our mission is to help people with EB become more self reliant

Epidermolysis Bullosa Action Network: The Epidermolysis Bullosa (“EB”) Action Network is a nonprofit charitable organization committed to accomplishing the following objective:

To improve the financial quality and emotional stability of EB families.

This is the goal we have set, and we are dedicated to this purpose

EB Nurse: Madeline Weiner

Befriend EB:
making life bearable

Kisses for Katie is a Not-For-Profit, Tax-Exempt Organization under IRC Sect 501(c)3, whose purpose is to raise the necessary funds for EB patients care, and to educate the public on the genetic disorder Epidermolysis Bulosa or EB

Wayne-Westland Friends of EB:
To support the needs of families in the
greater Wayne- Westland area who have EB (Epidermolysis Bullosa), to promote EB awareness and education, and to encourage those searching for a cure

EB Florida:
For those in Florida and Southern Georgia

Other Useful Links

www.nationalrehab.com
A wonderful wound care product supplier!!

www.allegromedical.com -
A wound care products supplier

www.ebdressings.com -
Direct Medical's web site. A medical supply company to get wound care bandages, such as mepitel and meplix.

www.tendra.com -
The company that makes Mepitel and Mepliex products.

http://www.telemedicine.org/stamford.htm
On-line Textbook of Dermatology

http://www.internationalebforum.org/index_booklets.php
Internationl EB Forum