Donation Account: IBAN AT656000000510045254, BIC BAWAATWW, EB-CLINET, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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About EB-CLINET

The motivation for establishing EB-CLINET was the unequal access to medical care in various countries. For this reason, the project "EB-CLINET - Clinical Network of EB Centres and Experts" was launched in 2011.

A rare disease like EB requires the pooling of expertise and experience. By "Linking Clinical Expertise in EB", EB-CLINET aims at:

  • strengthening the collaboration between medical institutions worldwide already providing specialised medical care for people with EB;
  • finding "candidate centres" for medical care in the field of EB, both within and beyond Europe, and building up EB-relevant knowledge within such centres of EB expertise; and
  • setting up an online community and an online database for best-practice medical care in EB.

Joining the network - EB-CLINET General Questionnaire

In preparation for building up the network, the EB-CLINET General Questionnaire was first sent out to existing contatcs in and outside Europe. The General Questionnaire asked for information about such factors as first points of contact for EB patients, the number of patients already known, available diagnostic options, experts for medical care and treatment, existing cooperation projects and other networks. To date, the General Questionnaire has been completed by EB experts from a total of 58 countries, which provides us with a good basis for further cooperation. 88 EB centres or EB experts have responded and have therefore been included in the EB-CLINET network as partners. If you are interested in joining the network please request the EB-CLINET General Questionnaire via email to: office(at)eb-clinet.org.