Organizations and Foundations
- Debra of America, Inc. is a not-for profit advocacy group that supports research and provides supportive services. These include:
- The 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.
- The Wound Care Clearinghouse: Supports families by providing available supplies to families in need.
- Family Crisis Fund: Provides emergency assistance to alleviate some of the financial burden of unreimbursed costs of medical supplies, other comforting aids, or procedures for families in need.
- EB Care Registry: Informs registry participants about EB research and clinical trials. Registry is based on patient reporting. The data collected through the registry will help characterize the condition of people living with all types of EB.
- EB Research Partnership
- EB Info World
- Epidermolysis Bullosa Friends
- Epidermolysis Bullosa Medical Research Foundation
- Pioneering Unique Cures for Kids (PUCK)
- The Children's Disease Skin Foundation
- United Survivors with Epidermolysis Bullosa
- University of Minnesota Clinical Trial: Stem Cell Therapy for Severe Forms of EB
EB Specialty Clinics
- Cincinnati Children's Hospital
- Children's Hospital Colorado
- Stanford School of Medicine
- Phoenix Children's Hospital