Journal_1_2014_final_WEB

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.
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EWMA Journal 2014 vol 14 no 1