Clinical Network of EB Centres and Experts

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1 Clinical Network of EB Centres and Experts EB-CLINET EB support around the world DEBRA International Congress September 2016, Zagreb, Croatia Gabriela Pohla-Gubo, PhD Department of Dermatology EB House Austria EB Academy University Hospital Salzburg Paracelsus Medical University Salzburg, Austria

2 EB-CLINET Background DEBRA Austria Founded in 1995 Raised money to build the EB House Austria EB House Austria (Centre of Expertise) Opened in 2005 Joint venture of DEBRA Austria and University Hospital of Dermatology, Paracelsus Medical University, Salzburg, Austria

3 EB-CLINET Background EB Academy Unit Dr. Gabriela Pohla-Gubo EB-CLINET Clinical network of EB centres and experts Global platform for EB clinicians and other EB health care professionals Launched in 2011 by the EB Academy of the EB House Austria Contact: Website:

4 EB-CLINET Objectives To promote the exchange of knowledge and expertise To create a basis for recruitment of EB patients for clinical trials To provide information on best practise treatment To facilitate finding EB services all over the world To ensure that all people living with EB have access to best quality support and medical care

5 EB-CLINET Work Packages In collaboration with specialists around the globe 1 2 EB Registry Professionals Training Recruitment of patients Communication about courses Clinical studies, therapies International training curriculum 3 Clinical Practice Guidelines Information on CPGs for EB Calls for experts to get involved Directories/Interactive Maps EB services all over the world 4 Assistance for requests Information on the EB-CLINET Website:

6 EB-CLINET Partnership EB-CLINET Partners Completing the EB-CLINET General Questionnaire (GQ) to provide localisation of EB services worldwide on the EB-CLINET Interactive Maps EB-CLINET partnership means To receive information and assistance for any EB related questions and needs To operate as our central point of contact for medical or patient requests To maintain the data correctly in the GQ and update them once a year Please let us know YOUR clinicians or other health care professionals willing to benefit from the EB-CLINET network!

7 EB-CLINET Partners (August 2016) EB-CLINET Partners: 82 EB-CLINET Countries: 56 Partners coming from: Australia Austria Belgium Bosnia Brazil Bulgaria Canada Chile China Colombia Croatia Cyprus Czech Republic Denmark Egypt Estonia Finland France Germany Greece Hungary India Iran Ireland Israel Italy Japan Kuwait Lithuania Luxembourg Macedonia Mexico Montenegro Netherlands New Zealand Norway Palestine Peru Poland Portugal Romania Russia Serbia Singapore Slovakia Slovenia South Africa South Korea Spain Sweden Switzerland Turkey Taiwan Ukraine United Kingdom USA

8 EB-CLINET & EB Without Borders (EBWB) Requests from different sources Clinicians, patients, family members, DEBRA staff Close cooperation and coordination EB-CLINET, EBWB, DEBRA International

9 EB-CLINET Examples (1) Question from Singapore: Do you have information material on wound care for low resource countries? Call for information in an EB-CLINET newsletter Collecting and bundling information (ongoing) see presentation by Anja Diem, MD Today: / 14:45 15:00 Title: Low-resource countries Are we willing to meet the challenge? EB-CLINET News April 2016

10 EB-CLINET Examples (2) Question from Argentina: We would like to build an EB-Centre. Do you have a list of equipment needed? Providing information about the facilities of the EB House Austria in Salzburg Referring and connecting to other international partners with similar institutions (e.g. Chile, Ukraine)

11 EB-CLINET Communication Sign up for the EB-CLINET Newsletter for up-to-date information! See all information on our EB-CLINET website!

12 Conferences 2017 Save the Date(s) Three conferences at the same venue: EB2017 Research Conference September th EB-CLINET Conference September th Annual ESDR Meeting September 2017 Salzburg, Austria Pohla_EB-CLINET_DI Paris 12

13 Congratulations to 20 YEARS DEBRA Croatia A huge THANK YOU to Slobodna, Vlasta and Branka for the fruitful cooperation! Pohla_EB-CLINET_DI Paris 13

14 Thank you for your attention!

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