• 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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Join DEBRA International

DEBRA International exists to promote the well-being of people living with epidermolysis bullosa (EB) and to promote research into the condition.

It is an alliance of national EB support groups worldwide to undertake those activities that are best accomplished at an international, rather than national, level.  It also offers member groups the opportunity to network, to share information and provide mutual support. Please see DEBRA International's main activities to find out more.

DEBRA International has member groups in Europe, North America, Central and South America and Australasia.

Guidelines for national EB support groups wishing to join DEBRA International:

Who can join?

  1. Full membership is open to all national EB support groups who are legally constituted under the laws of their own country.
  2. Groups that are not yet registered in their own country can not become full members of DEBRA International but they are welcome to participate in activities as an observer/guest.
  3. All member groups should have a majority (51% or more) of members who either have EB themselves or are the parents of a child with the condition.
  4. It is for people living with EB in each country to determine how they wish to organise themselves on a national level. However, in normal circumstances, there should not be more than one group established in each country and DEBRA International encourages cooperation rather than fragmentation.
  5. Member groups are encouraged to use the name DEBRA at a national level, either as their main or subsidiary title.

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How we can support you in getting established

  1. Unfortunately, DEBRA International can not help in providing significant funding to help new groups become established. However, considerable non-financial support is available and small grants of up to €3.500 can be applied for on an annual basis for specific projects that will benefit people with EB. See DEBRA International's Project grants (Small Grants Scheme) for details.
  2. Groups with limited resources are offered support for travel and accommodation costs to be able to participate in DEBRA International key events. See Congress attendance grants (Small grants scheme)
  3. Member groups publish a wide range of information material on various aspects of living with EB. New groups are welcome to translate this material, if necessary, for use in their own countries, providing that the original is credited.
  4. DEBRA International has a wide network of contacts with EB professionals, who can provide support and guidance to professionals in other countries who wish to develop their knowledge about the condition. EB-CLINET, the association of specialist EB treatment centres, can provide support to new clinical centres in formation and DEBRA International is developing a Professional training programme.
  5. Common publicity and campaigning material is available which can be translated for national use. See Advertising & Advocacy for details.
  6. The EB without borders committee, a key group within DEBRA International, offers mentoring support, individually assisting new groups to form and develop.
  7. DEBRA International can also help establish a mentoring cooperation with another group as a continuing source of advice and information (see our Partnership programme).
  8. Regular updates on developments in research are published in English which can be translated.

September 2013

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