Global EB Network

DEBRA patient organisations

Around the globe, more than 50 national DEBRA organisations do a tremendous job of improving life for local Epidermolysis Bullosa (EB) communities. Most are members of the global alliance, DEBRA International. While we cannot list everyone, here are five of the most impactful national chapters making a global difference:

  • DEBRA UK (United Kingdom): The founding chapter of the network (established 1978) and a primary driver of global EB funding. They heavily finance clinical research, partner directly with the NHS for specialised care, and provide community support like holiday homes and financial grants.

  • debra of America (United States): The largest patient advocacy framework in North America. They direct substantial funding into gene and cell therapy trials, provide a Wound Care Distribution Program, and offer direct patient aid through dedicated nurse educators.

  • DEBRA Austria: A global leader in clinical expertise. They founded the world's first dedicated EB clinic—the EB House Austria—and manage EB Clinet, a vital network connecting healthcare professionals worldwide to share treatment strategies.

  • DEBRA Ireland: A powerhouse in research and advocacy that drives international priority-setting campaigns. They co-fund global clinical trials, actively involve patients in research design, and host major international patient engagement programs.

  • DEBRA Australia: The central fundraising and advocacy hub for the Australasia region. They hold prominent leadership roles on the DEBRA International Executive Committee and fund essential in-home nursing care and research grants

EB research funding & investment

  • ABE – Accelerating Breakthroughs in EB — A mission-driven investor that funds and builds companies developing treatments for EB and DEB.

  • Cure EB — A research-focused charity funding treatments and, ultimately, a cure for all types of EB.

  • DEBRA Research — The research arm of DEBRA Austria, funding translational research and clinical development toward EB treatments and a cure.

  • EB Research Partnership (EBRP) — A non-profit dedicated to funding research to treat and cure EB, using a venture philanthropy model.

  • ABE – Accelerating Breakthroughs in EB — A mission-driven investor that funds and builds companies developing treatments for EB and DEB.

EB clinical & research networks

  • ERN-Skin — The European Reference Network for rare and complex skin diseases, connecting hospitals, experts and patient representatives (with a dedicated EB group).

  • EB-CLINET — An international clinical network linking EB healthcare professionals and centres to share expertise and improve care.

CAB & Patient-Engagement Resources

  • GlobalCAB — Home of the Community Advisory Board programme, with guidance, references and training for patient-led CABs; managed by EUPATI Spain in partnership with EURORDIS.

  • EUPATI Toolbox – Community Advisory Boards — Practical guidance and downloadable tools for setting up, running and engaging with CABs.

  • EURORDIS – Rare Diseases Europe — A non-profit alliance of over 1,000 rare disease patient organisations advocating across Europe.

  • European Patients' Forum (EPF) — An umbrella organisation of patient groups across Europe and across disease areas, ensuring the patient voice reaches EU policy.