ERN Skin is one of 24 European Reference Networks (ERNs). The ERNs bring together highly specialised healthcare providers for rare and undiagnosed diseases within the EU. The ERN Skin is led by Professor Christine Bodemer, head of the Department of Dermatology at the Necker Enfants- Malades Hospital, Paris, France, and focuses on rare and undiagnosed skin conditions. It includes 56 centres from 18 countries. It is split into Thematic groups. One of those groups is Inherited Epidermolysis Bullosa and Skin Fragility Syndromes.
The patient voice is represented in each of the thematic groups through the European Patient Advocacy Group (ePAG) members coordinated by EURORDIS Rare Disease Europe.
Recently, the ERN Skin held a Patient Education Program and Scientific Meeting for its members. 80 participants enrolled in the two day event. DEBRA was represented by Sinéad Hickey, DEBRA Ireland, Ingrid Jageneau, DEBRA Belgium and Vlasta Zmazek DEBRA Croatia at the meeting.
The first morning focused on Patient Education Programs (PEPs) and Therapeutic Education Programs (TEPs). PEPs are a process for influencing patient behaviour and producing the changes in knowledge, attitudes and skills necessary to maintain or improve health. The morning focused on what PEPs mean, how to develop one and examples of PEPs. It finished with a panel discussion with ePAG members.
The afternoon of the first day explored drug repurposing with some examples of drug development.
Day 2 of the meeting consisted of scientific talks from each of the ERN Skin thematic groups and interesting clinical cases.
For more information on the ERN Skin and the recent ERN Skin meeting please visit ERN Skin website.