Patients & Familes

The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), is the only national non-profit dedicated to funding research and providing services and programs for those with Epidermolysis Bullosa (EB) — “The Worst Disease You've Never Heard Of.”™

DEBRA International is a worldwide network of national groups working on behalf of those affected by epidermolysis bullosa (EB). On its site, you will find information about the condition, appropriate medical care, research into EB and living with EB as well as links to the national DEBRA groups around the world.

The DEBRA International vision is to ensure that people living with EB have access to the best quality support and medical care, while also driving the development of effective treatments and cures.

EB Research Partnership (EBRP) is the largest global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB). On their site, you will find information regarding current research efforts and clinical trials, resources for EB patients and families, learn ways to become “EB Active”, and learn about current fundraising events being held across the US.

Stanford University School of Medicine’s Department of Dermatology has a long-standing program in EB research which is directed at developing new therapies for EB. Here, you can find information on their ongoing clinical trials and research projects, as well as links to their Pediatric, Children’s and Adult EB Clinics. There’s also an EB resources link with information about FAQ’s, wound care information and supplies, and information regarding multiple camps for children with severe skin conditions.

Cincinnati Children’s EB Center is one of a few in the nation that provides comprehensive care for EB patients.  Here, you can find information on their outpatient clinics, inpatient care, and consultations provided via telephone and e-mail. Under “Patients and Family”, they also include information on clinical trials and research studies, patient resources, vaccine resources and ongoing support resources.