Journal_1_2014_final_WEB
Journal_1_2014_final_WEB
Journal_1_2014_final_WEB
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Organisations<br />
EB-CLINET<br />
– Clinical<br />
Network of<br />
EB Centres<br />
and Experts<br />
Dr. Gabriela Pohla-Gubo,<br />
EB-CLINET project leader<br />
Member of the Executive<br />
Committee of DEBRA<br />
Austria and Executive<br />
Manager of the Academy at<br />
the EB House Austria<br />
www.debra.org.uk<br />
EB-CLINET<br />
– Clinical Network of EB Centres and Experts<br />
Epidermolysis bullosa (EB) is a severe and rare<br />
skin disease. EB-CLINET was launched in 2011 to<br />
establish a clinical network of EB centres and<br />
experts across all European countries and beyond.<br />
Epidermolysis Bullosa (EB)<br />
Approximately 30,000 people in Europe live with<br />
EB. The symptoms of EB include blisters, wounds,<br />
and scars that form not only on the skin but also on<br />
the mucous membranes, including those of the<br />
mouth, eyes, and gastrointestinal tract, from the<br />
slightest mechanical stress. Complications associated<br />
with EB include pain, itching, scarring, the fusion<br />
of fingers and toes, tooth decay and tooth loss,<br />
nutritional and digestive problems, and in some<br />
cases, aggressive skin tumours. Life with EB is a tremendous<br />
challenge for patients and their families.<br />
The disorder does not yet have a cure.<br />
DEBRA Austria & EB House Austria<br />
DEBRA Austria was founded in 1995 as a patient<br />
support group for those who suffer from EB. In<br />
cooperation with the Department of Dermatology in<br />
Salzburg, Austria (General Hospital, Paracelsus<br />
Medical University), DEBRA Austria set up the EB<br />
House Austria in November 2005 with private<br />
donations and a one-time subsidy granted by the<br />
Austrian government.<br />
EB-CLINET<br />
To date, more than 400 patients with EB from<br />
24 countries in Europe and beyond have been diagnosed<br />
and/or treated at the EB House Austria. The<br />
expertise should travel, however, rather than the<br />
patient. EB-CLINET therefore intends to strengthen<br />
the collaboration between clinicians and medical<br />
centres already specialised in EB. Moreover, EB-<br />
CLINET aims to support the development of new<br />
EB centres in countries without such services.<br />
At present, EB-CLINET has 52 affiliated partners in<br />
43 countries (including 25 of the 28 EU member<br />
states, 6 additional European countries, and 12<br />
countries from outside of Europe). By cross-linking<br />
its partners, this network offers the opportunity to<br />
work collaboratively on a number of projects,<br />
including a global EB register, professional training,<br />
and elaboration of clinical practice guidelines.<br />
Moreover, EB-CLINET serves as an information<br />
channel to share and exchange relevant news<br />
about treatment or research in EB. Online information<br />
is distributed via the website (www.eb-clinet.<br />
org) and EB-CLINET eNews. Personal exchange is<br />
assured through regular workshops, trainings, and<br />
conferences, including the two EB-CLINET Conferences<br />
in 2012 and 2013, respectively.<br />
EWMA international<br />
Partner Organisation<br />
The EB House Austria is a centre for cutting-edge<br />
medical treatment and targeted research. Its three<br />
units (Outpatient Clinic, Research Laboratory, Academy)<br />
meet the EU-recommended criteria for a Centre<br />
of Expertise (CE). Operation costs continue to be<br />
paid by private donations to DEBRA Austria.<br />
See www.debra-austria.org and www.eb-haus.org<br />
for more details.<br />
Encouraging research results that relate to alleviation<br />
and a causative cure of this disabling skin disease<br />
are on the horizon. EB-CLINET will be able to<br />
support the recruitment of patients for upcoming<br />
clinical trials and provide these patients with the<br />
chance to receive one of the treatment options.<br />
In this way, EB-CLINET hopes to significantly<br />
improve the quality of life for patients with EB.<br />
EB-CLINET has 52 affiliated<br />
partners in 43 countries<br />
(including 25 of the<br />
28 EU member states,<br />
6 additional European countries,<br />
and 12 countries from outside<br />
of Europe)<br />
For more details on EB-CLINET<br />
see www.eb-clinet.org.<br />
104<br />
EWMA <strong>Journal</strong> <strong>2014</strong> vol 14 no 1