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The key aim of the organisation is to coordinate, in collaboration with its members, activities that are for the benefit of everyone affected by EB globally: the international patient community, patient support and advocacy groups, healthcare professionals, researchers, and industry.


A world where anyone living with EB has support from a DEBRA group to access clinical and social care.


Promote and coordinate international collaboration between patients, health and social care professionals, researchers, NGOs, and national governments to improve the lives of those living with EB while cures are found and made available for all types of EB.


  1. Develop and support our international network of DEBRA groups.

  2. Develop and promote best practices for EB care and increase professional
    knowledge of the condition.

  3. Coordinate international research efforts to better understand EB, to find effective treatments, and to develop cures for all types of EB.

  4. Work closely with industry and institutions that are developing and commercialising symptom relief
    treatments and cures.

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