1. ERN skin Coordinator: Prof. Christine Bodemer
(APHP - Necker Enfants Malades Hospital –
Department of Dermatology - MAGEC)
with the support of Fondation René Touraine –
Genodermatoses & Rare Skin Disorders Network.

2. it is a 56 centres of expertise in the field of rare and complex skin diseases from 18 countries gathered in one network to bring highly-specialised,
high-quality and accessible healthcare closer to the patients.

3. ERN skin Official endorsement of:
European Academy of Dermatology and Venereology (EADV)
European Society of Paediatric Dermatology (ESPD)
European Dermatology Forum (EDF).

4. Rare and Undiagnosed Skin Diseases :
ERN skin
Rare and Undiagnosed Skin Diseases :
about 600 heterogeneous and complex conditions that can be interconnected and share common management in the care and the field of research
stepwise approach

5. Deep phenotyping can be defined as the precise and comprehensive analysis of phenotypic abnormalities in which the individual components of the phenotype are observed and described

8. ERN skin ERN collaborative platform:
to help the members of each ERN to work together (forum for each group, agenda, news from the ERN, etc.)
CPMS (Clinical Patient Management System):
discussion of complex patient cases referred to the ERN

9. ERN-SKIN goals
MARCH 2018: Conference calls of each sub-thematic and transversal group
- Sub-thematic group:
update guidelines at 5 years
detailed list of avalaible guidelines
working groups with overlapping ERNs
- Transversal group:
ERN-Skin training 5 year programme
Strategy for developing practical training in each country
Development of an e-learning section
Outcome: Development of a patient satisfaction survey with e-PAG
Deep Phenotyping: SPOT app development
Registry: ERN-Skin registry strategy

10. ERN-SKIN goals APRIL 23 : Executive Committee Meeting
(chairs of the sub-thematic and transversal groups, Paris)
JUNE 15: By this date, each health care provider representative should have updated the list of services available in their hospital, based on a template provided by the ERN-Skin General Coordination team
SEPTEMBER: Conference calls of each sub-thematic and transversal group

11. ERN-SKIN goals NOVEMBER 22: ERN-Skin Executive Committee Meeting
(chairs of the sub-thematic & transversal group, Rome)
NOVEMBER 23: ERN-Skin Board Meeting and sub-thematic groups
(every health care provider representative, Rome)
NOVEMBER 24: ERN-Skin training, Rome