A key player in European cooperation in the field of rare skin diseases
In 2017, the European Union Member States gave their 5-year endorsement to the ERN-Skin, the European Reference Network for rare, low prevalence and undiagnosed skin disorders.
Under the coordination of Christine Bodemer, the ERN-Skin gathers 56 healthcare providers from 18 countries and 20 patient representative groups. More than 15 different specialties are involved in the ERN-Skin.
The ERN-Skin was built thanks to the support of FRT and the exemplary cooperation between the FRT-Genodermatoses & Rare Skin Disorders Network, EB-Clinet, and EADV Genodermatoses Task Force. This network is endorsed by :
- EURORDIS-Rare Diseases Europe,
- the European Academy of Dermatology and Venereology,
- the European Society for Paediatric Dermatology and
- the European Dermatology Forum.
Fondation René Touraine is responsible for managing and coordinating the project.
Ichthyosis Awareness Month 2019 : more than ever needed