DEBRA IS THE ACRONYM FOR THE DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION.
There are now debra “national groups” in about 40 countries worldwide. The “umbrella” nonprofit organization, debra international*, was launched in 2008. Ebmrf has been an abiding partner in this endeavor since 2007. Rare disease advocacy organizations have given strong support for our effort since 2009. The debra groups and other eb organizations working in accord for international eb awareness week are (see menu at the debra international website for the many debra national chapters who are working in harmony on this campaign, or see the global map at this website.
DEBRA Canada is a member of DEBRA International (DI), a worldwide network of patient support groups whose collective goal is to help people with Epidermolysis Bullosa (EB). The first DEBRA group was founded in the UK by a group of parents whose children were affected by Epidermolysis Bullosa (EB). The original aim of the charity was twofold: to stimulate knowledge of, and interest in, EB for the benefit of patients and their families, and to fund medical research for EB. From these humble origins, DEBRA has grown significantly, with DEBRA groups now established in about 40 countries around the world. DI is an umbrella group whose members are the national associations representing people with EB in their countries. All member groups are autonomous, choosing to work together on matters of common interest. Europe, North America and Australasia are well-represented among the DI member groups, and there is a growing membership in Central and South America, Asia, the Middle East and Africa.
Most recently, the good people from Nano Minerals have sent us a lot of publicity via their annual UK health festival. Thanks Brenda, you’re a star.