Organizations and Foundations
- Debra of America (the Dystrophic Epidermolysis Bullosa Research Association of America) is a non-profit advocacy group that provides supportive services and supports research.
- New Family Advocate program: Supports families by providing a welcome package of often used supplies and if needed, visiting families for a day to share experiences and advice on a peer level.
- Wound Care Distribution program: Supports families by providing available supplies to families in need.
- EB Nurse Educator Program: Educators available by phone or email to answer questions and provide guidance to individuals with EB, families, the professional community and general public.
- Government Affairs and Legal Aid program: Seeks to educate legislators around the United States about the importance of regulations and policies that affect the EB community.
- EB Research Partnership
- Epidermolysis Bullosa Medical Research Foundation
- The Children’s Disease Skin Foundation
EB Specialty Clinics
- Cincinnati Children’s Hospital
- Children’s Hospital Colorado
- Children’s Hospital of Philadelphia
- Stanford School of Medicine
- Phoenix Children’s Hospital
- The Debra Adult EB and Skin Cancer Clinic