Here is the site for the Dystrophic Epidermolysis Bullosa Research of America (DEBRA.org)
This is the only national not for profit organization dedicated to supporting research for a cure and treatment for EB as well as providing services to those families who are dealing with EB on a daily basis. I currently sit on the Board of Trustees of the organization.
www.debra.org

We order our bandages and supplies from National Rehab. They have been very helpful to us in so many ways. They have put together an informative site for those who live with EB.
www.ebnurse.org

Shameful Plugs:

If you live in the Boston area, or travel there for work or pleasure, stop in at the Bread & Chocolate Bakery. Ask for Eunice or Weezer and tell them you heard about them from Rafisworld.com. Weezer and Eunice are old friends and Eunice is an amazing chef.
Bread & Chocolate Bakery

If you live in New York and want your kids to have a great summer or after school experience, call my good friend, Peter Corbin. He is the owner, operator of Corbin’s Crusaders. Take a look:
Corbin’s Crusaders