Rare Skin Diseases Network - Fondation René Touraine

The Genodermatoses Network is the International Network on Rare Genetic Skin Diseases for professionals and patients. The network gets together more than 75 medical and research teams as well as patient groups in more than 30 countries. This network started in 2003 thanks to FRT - Fondation René Touraine support. This network aims at improving health care and social support for patients with rare

and severe skin diseases by promoting a patient based approach and organizing healthcare networks. From 2008 to 2011, the Genodermatoses Network has been co-funded by the European Union as a European Reference Network Pilot Project for Rare Diseases. It is now co-funded by the EADV - European Academy of Dermatology and Venereology. The Genodermatoses Network develops multiple actions to increase awareness and accesse to knowledge and services such as:
- an online directory for patients and health care providers,
- training sessions for specialists, nurses, paramedics and general practitioners
- surveys on the needs of patients, patients’ families and health care professionals
- international meetings and workshops