• 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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11.09.2013

EB Without Borders

EB Without Borders (EBWB) is a key initiative of DEBRA International. Its focus is on helping patients, families and doctors in countries where there is no or little support and to help establish national DEBRA groups.

Making connections across geographic and political borders is vital for DEBRA groups to grow, flourish and provide support to those with EB where there are no DEBRA organisations as yet. 

Within the EBWB committee, Regional Ambassadors have been assigned to cover specific regions and provide guidance and mentoring support to individuals; as well as newly formed or existing national DEBRA chapters.

A new addition to the EBWB committee, the 'International Coordinator' will respond to all requests initially, and refer more complex cases and queries to the appropriate Regional Ambassador for further support.

Specifically, the mentoring activities of EBWB comprise of the following:

Partnership building: Making Contacts

  • Connecting patients, affected families, clinicians and others
  • Helping to find local contacts, e.g. translators, health institution officials, etc.
  • Connecting developed groups with less developed or emerging groups to establish a Partnership programme

Capacity building: Building up knowledge and expertise

  • Establishing basic knowledge and medical expertise about EB, so in future, support to EB patients and families can be provided locally
  • Establishing / raising awareness and fundraising expertise, in order to strengthen the local EB support network organisationally and financially

Building infrastructure and networks

  • Helping to establish a national DEBRA chapter to provide the structure for local EB support
  • Promoting DEBRA International membership which involves a number of services and support
  • Promoting and strengthening networks with other DEBRA groups and rare disease organisations, e.g. through participation in DEBRA International key events

Barbara Dissauer, DEBRA Austria, and Erin Hoyos, DEBRA Canada

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