• Donate now...

    Through your donation you can help to secure the operation of the EB House Austria and support research on the way to a cure for Epidermolysis Bullosa. The EB House Austria is financed completely by DEBRA Austria, the patient organisation for Butterfly Children.

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  • ... or help individually.

    Here you can find different ways to help "Butterfly Children" - with organising events, etc. 

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Donation Account: IBAN AT02 2011 1800 8018 1100, BIC GIBAATWWXXX, DEBRA Austria, Am Heumarkt 27/1, 1030 Vienna

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EB-CLINET - International Networking


Increasingly more people with EB from other countries visite the at the EB House Austria in order to obtain support in a variety of ways. It was for this reason that the network known as "EB CLINET - Clinical Network of EB Centres and Experts" was called into being in 2011, since a rare disease requires the consolidation of all previously made experiences, both clinical and scientific.

In accordance with the motto 'Linking Clinical Expertise in EB', the project aims to bring together all the EB specialists across the globe. In this way, the exchange of professional knowledge and experience will make it possible for new findings and approaches in the medical treatment of EB to be beneficial to all patients without delay.

Aims of the EB-CLINET Initiative are:

 

  • to develop a world-wide network of EB centres and EB experts,
  • to promote the exchange of knowledge and experience regarding EB,
  • to ensure professional treatment for patients with EB,
  • to facilitate cross-border healthcare and
  • to provide a basis for clinical studies with the purpose of developing therapies to alleviate or even remedy this currently incurable disease.

Families living with EB should also be able to find support in overcoming their challenges in their own countries, without exhausting travel, without language barriers, without financial hurdles but with highly qualified and respectful treatment.

EB-CLINET Network

 

To become a part of the EB-CLINET Network, a comprehensive questionnaire must first be completed. The questions posed require answers, among other things, about who the main contacts for people with EB are in the particular country, about the number of known EB patients already registered, what the diagnostic options are, about experts for care and treatment, as well as about existing collaborations and membership in other networks.

This questionnaire has already been submitted so far by a total of 103 EB centres or individual EB specialists, respectively, from 62 countries in the world. In Europe, more than 35 EB centres or experts have completed the questionnaire (marked blue on the map of Europe) and are thus partners within the EB-CLINET network. Interested persons can request the questionnaire at office(at)eb-clinet.org.

Map of the European EB-CLINET partners
EB-CLINET partners Europe (August 2018)
Map of the EB-CLINET partners worldwide
EB-CLINET partners worldwide (August 2018)