• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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Activities

Common services and organisational development

  • Annual DEBRA International congress
  • Organisational development and fundraising workshops
  • Translation of materials
  • Consultancy to individual groups using the expertise of other member groups
  • Assisting new groups to establish themselves
  • Communication (DEBRA International website and newsletter)

Research coordination

  • Single unified peer review system for all DEBRA research grant applications  and coordination of national funding
  • Facilitation of funding for multi-national research projects from member groups and foundations
  • Consensus meetings and Task Forces
  • Organisation or sponsorship of scientific meetings

Clinical/education

  • Support for regional clinical conferences
  • International EB Professionals’ Forum
  • Assistance in establishing EB clinics/services
  • Assistance to training visits by clinicians to established centres of reference
  • Maintaining contact with international clinical centres with an interest in EB

Political

  • Contact with international institutions on issues of concern, e.g. "orphan drugs", rare diseases programmes, etc.
  • Active involvement in international and regional NGOs, e.g EURORDIS, European Disability Forum, EGAN
  • Applications to international organisations for funding

Welfare

  • Responding to enquiries from people with EB (usually via the website) about matters of individual concern either by referral to the relevant national group or directly where no group exists
  • Providing individual advice or information at the request of the national group

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