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Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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DEBRA News

24.02.2017

Viviendo con EB: presentamos a la artista Femmy Broer

Viviendo con EB: presentamos a la artista Femmy Broer Cuando nací en 1990 con EBDD, fue un golpe muy duro para mi madre. Ella tiene EBDR y le dijeron que no la pasaría a sus hijos. En 2008 me diagnosticaron pruriginosa también. Debido a mi madre, teníamos mucho conocimiento de la EB y cómo vendar lo cual me hizo la infancia mucho más fácil.Cuando tenía 9 años, mi tío hizo un cortometraje...[more]

17.02.2017

Living with EB: meet artist Femmy Broer

Living with EB: meet artist Femmy BroerWhen I was born in 1990 it was a shock for my mother that I have DDEB, because she was told that she had RDEB and could not pass it on to her children. In 2008 the diagnosis pruriginosa was added. Because of my mother there was enough knowledge about EB and bandaging, which made my childhood a lot easier. When I was 9 my uncle made a Dutch short film about...[more]

09.02.2017

EB Without Borders: Building bridges, breaking barriers

EB Without Borders: Building bridges, breaking barriers September 23rd, 2016. Zagreb.As part of the EB Without Borders presentation, I detail DEBRA Singapore’s (DS) outreach work in Cambodia, India, etc. and conclude that we are not planning to engage with Pakistan yet given the socio-political challenges associated with the country. The Fates must have been listening. September 29th, 2016....[more]

13.01.2017

IX International Symposium of Epidermolysis Bullosa

IX International Symposium of Epidermolysis Bullosa In December, DEBRA Chile together with Clínica Alemana of Santiago organized the IX International Symposium of Epidermolysis Bullosa -Crystal Skin Children- in Santiago, Chile. The main objective of this Symposium, which is held every two years in Santiago, is to educate patients and healthcare professionals on clinical care and research on...[more]

16.12.2016

The ERN-Skin is approved

The ERN-Skin is approved Introducing a network that gathers experts’ knowledge and data in order to provide high quality and accessible healthcare to all EB patients in Europe. If you were tasked with improving EB healthcare all across the EU, where would you start? Well, you might begin by linking all the EB experts and centres around Europe. You would possibly then ask them to provide...[more]