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We serve to enable all EB stakeholders and organisations to support the international EB community.


A world where anyone with epidermolysis bullosa (EB) has support from a DEBRA group, and access to specialist treatments, healthcare, and social support.


Empower people with EB and their support networks, advocates, healthcare professionals, researchers, and industry with the knowledge and tools they need to better the lives of those with epidermolysis bullosa (EB) worldwide.


  1. Membership capacity building
    Enable established and potential member DEBRA/EB advocacy groups to develop and strengthen their organisations in order to best engage and include as well as serve their national EB communities.

  2. Education
    Provide and facilitate access to educational opportunities to increase knowledge and understanding of EB, EB research, and EB healthcare.

  3. Research
    Work in partnership with institutions and industry as the primary patient advocacy organisation (PAO) for international EB research ventures.

  4. Advocacy
    Advocate with, and for, those with EB and their support networks on a global scale to increase awareness of EB and influence international rare diseases policies.

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