Miles� Mom Michele and my Mom started an EB support group in New York where we get to see other kids who have EB!!
Other goals of the group include:
- to increase public awareness about EB,
- to educate medical professionals in New York about the disease,
- to provide emergency funds to the New York families, and
- support research toward a cure for EB.
The group meets on alternate months at various locations throughout the New York area. The meetings are open and anyone interested in learning about EB or interested in volunteering to help the group are welcome.
Donations to the Support Group can be made by writing to:
DebRA of America
West 36th Street Suite 404
NY, NY 10018
Check payable to "DebRA of America".
Memo Line: NY EB Support Group
Your donation will then be directed to the Support Group.
You can also contact Faye Dilgen, NY EB SG Leader, at [email protected].