EBCare Registry


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About DEBRA

DEBRA International  is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition, Epidermolysis Bullosa (EB). We provide information about the condition EB, appropriate medical care, research into EB and living with EB as well as links to the national DEBRA groups around the world. Our member groups are autonomous, choosing to work together on matters of common interest. Europe, North America and Australasia are well represented amongst the member groups and there is a growing membership in Central and South America, Asia and, to a lesser extent, Africa.

Our 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 for EB

DEBRA of America Inc. is dedicated to finding a cure for EB, which affects 1 out of every 50,000 live births in the United States today. DEBRA of America was organized more than 25 years ago to help patients and their families.  Its activities include:
  • Promoting and supporting extensive scientific research to achieve a cure for EB.
  • Assisting, supporting and guiding families in the physical and emotional treatment of individuals with EB. DEBRA of America's programs include the daily services of an experienced Nurse/Educator, a national physician referral service, a network of regional support groups and an information filled website.
  • Representing families and patients to the public and government institutions.