a student
I have just completed a research paper regarding this devestating disease. I can only imagine the pain your whole family has to endure. There are new developments in the works all over the world. Thank God we are finally hearing about epidermolysis bullosa. I have just learned about it this summer at a fund raising concert. The word is out, and I have strong hope that a cure is in sight. My prayers are with you and your granddaughter. Have you contacted DEBRA at 40 Rector St NY NY?