Journal_1_2014_final_WEB

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Organisations EB-CLINET – Clinical Network of EB Centres and Experts Dr. Gabriela Pohla-Gubo, EB-CLINET project leader Member of the Executive Committee of DEBRA Austria and Executive Manager of the Academy at the EB House Austria www.debra.org.uk EB-CLINET – Clinical Network of EB Centres and Experts Epidermolysis bullosa (EB) is a severe and rare skin disease. EB-CLINET was launched in 2011 to establish a clinical network of EB centres and experts across all European countries and beyond. Epidermolysis Bullosa (EB) Approximately 30,000 people in Europe live with EB. The symptoms of EB include blisters, wounds, and scars that form not only on the skin but also on the mucous membranes, including those of the mouth, eyes, and gastrointestinal tract, from the slightest mechanical stress. Complications associated with EB include pain, itching, scarring, the fusion of fingers and toes, tooth decay and tooth loss, nutritional and digestive problems, and in some cases, aggressive skin tumours. Life with EB is a tremendous challenge for patients and their families. The disorder does not yet have a cure. DEBRA Austria & EB House Austria DEBRA Austria was founded in 1995 as a patient support group for those who suffer from EB. In cooperation with the Department of Dermatology in Salzburg, Austria (General Hospital, Paracelsus Medical University), DEBRA Austria set up the EB House Austria in November 2005 with private donations and a one-time subsidy granted by the Austrian government. EB-CLINET To date, more than 400 patients with EB from 24 countries in Europe and beyond have been diagnosed and/or treated at the EB House Austria. The expertise should travel, however, rather than the patient. EB-CLINET therefore intends to strengthen the collaboration between clinicians and medical centres already specialised in EB. Moreover, EB- CLINET aims to support the development of new EB centres in countries without such services. At present, EB-CLINET has 52 affiliated partners in 43 countries (including 25 of the 28 EU member states, 6 additional European countries, and 12 countries from outside of Europe). By cross-linking its partners, this network offers the opportunity to work collaboratively on a number of projects, including a global EB register, professional training, and elaboration of clinical practice guidelines. Moreover, EB-CLINET serves as an information channel to share and exchange relevant news about treatment or research in EB. Online information is distributed via the website (www.eb-clinet. org) and EB-CLINET eNews. Personal exchange is assured through regular workshops, trainings, and conferences, including the two EB-CLINET Conferences in 2012 and 2013, respectively. EWMA international Partner Organisation The EB House Austria is a centre for cutting-edge medical treatment and targeted research. Its three units (Outpatient Clinic, Research Laboratory, Academy) meet the EU-recommended criteria for a Centre of Expertise (CE). Operation costs continue to be paid by private donations to DEBRA Austria. See www.debra-austria.org and www.eb-haus.org for more details. Encouraging research results that relate to alleviation and a causative cure of this disabling skin disease are on the horizon. EB-CLINET will be able to support the recruitment of patients for upcoming clinical trials and provide these patients with the chance to receive one of the treatment options. In this way, EB-CLINET hopes to significantly improve the quality of life for patients with EB. EB-CLINET has 52 affiliated partners in 43 countries (including 25 of the 28 EU member states, 6 additional European countries, and 12 countries from outside of Europe) For more details on EB-CLINET see www.eb-clinet.org. 104 EWMA Journal 2014 vol 14 no 1
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Volume 14 Number 1 May 2014 Publish
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BeneHold TASA The future of wound
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24th Conference of the European Wou
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The exciting new Negative Pressure
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Figure 3: Rate of PU at different l
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Science, Practice and Education Any
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12th Scientific Meeting of the Diab
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Nutrition Intervention Ultimately,
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NO ONE IMAGINED WOUND THERAPY COULD
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Science, Practice and Education Fig
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Leading the way SETTING THE STANDAR
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Table 1. Survey on included studies
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Scientific Communication heart dise
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Scientific Communication Nutrition
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