• 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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EB Without Borders

Group picture of 8 members of the EBWB team

EB Without Borders (EBWB) is one of the core initiatives of DEBRA International. Its mission is to help patients, families and doctors in countries where there is no DEBRA structure to support them and to assist new groups to form and develop.

The EB Without Borders committee is truly international: Group members are located in Belgium, Chile, Croatia, New Zealand, Singapore, Slovenia and Spain.

Depending on the type of request, language skills and experiences with a specific country or region, the committee will define the best suitable person among them to fit the needs, who will then act as a source of mentoring support.

How do we help?

Making contacts

  • We try to help you find contacts within your country or region: Other patients and families with EB, doctors, nurses and other medical professionals with EB expertise, caregivers, potential sponsors and health authority officials.
  • We can get your national EB support group in touch with more developed groups to establish a mentoring partnership (see Partnership programme).

Capacity building

  • Advocacy: We encourage you to find and join with others with EB to form a strong patient-based EB support group. By strengthening the member base of families living with EB, you will have better chances to change government policies, as well as raise awareness and funds for EB.
  • Basic knowledge about EB: We provide basic information packages and links to useful websites to help you find out more about EB.
  • Medical expertise: Through the network of EB-CLINET, a growing platform of clinical centers and experts in the field of EB, we will enable medical professionals in your country to gain EB-specific expertise.
  • Fundraising: Experts from more developed groups may help you set up an efficient fundraising (see Partnership programme)
  • Campaigning and Awareness: There is a lot of campaigning material available that can be used to raise awareness of EB. Please contact DEBRA International (reference 'Communications material') for more information.

Infrastructure and networks

  • Setting up a national EB support group: We will assist you in the process of establishing a national DEBRA chapter in your country.
  • Becoming a DEBRA International member: Being part of a worldwide network of EB support groups is a major benefit to your national group (for details see Services for member groups). You are encouraged to join the DEBRA International network and supported in the application process. See also Join DEBRA International.
  • Introduction to Rare Disease and EB networks and events: We will inform you about and introduce you to the key events and networks of the EB and Rare Disease communities.
  • Event organisation: We may assist you, if time and funds allow it, in the organisation of your own event, or bring you together with other national groups with appropriate experience (Partnership programme).

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