An action by Fondation René Touraine

Rare Skin Diseases Network - a Fondation René Touraine’s network to improve health care and social support for patients with severe and rare skin diseases

Since 2003, the Fondation René Touraine has coordinated the Rare Skin Diseases Network. Medical and paramedical teams, patient representatives, scientists, public health authorities, industries work together to improve health care and social support for patients with severe and rare skin disorders, and to promote a patient based approach.

This network is open to every expert and centre involved in the management of rare skin diseases. Join the network!

From 2008 to 2011, the Rare Skin Diseases Network was co-funded by the European Union, as a pilot network for European Reference Network for Rare Diseases : Together Against Genodermatoses (TAG-2007 335).This European project involved 12 partners from 8 countries (Cyprus, France, Greece, Italy, Portugal, Romania, Slovenia and Turkey).

Between 2013 and 2017, the Rare Skin Diseases Network received support from the European Academy of Dermatology and Venereology (EADV). By funding this project, EADV:

• supported a network dedicated to patients and their carers
• promoted North-South collaborations
• contributed to the development of the future European Reference Network on rare skin diseases, the ERN-Skin.

Fondation René Touraine, thanks to its Rare Skin Diseases Network, gathered all the future ERN-Skin partners.

A key player in European cooperation in the field of rare skin diseases

In 2017 and in 2022, 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 20 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 between the Fondation René Touraine and its Rare Skin Diseases Network, EB-Clinet and EADV Task Forces. This network is endorsed by:

• EURORDIS-Rare Diseases Europe,
• the European Academy of Dermatology and Venereology,
• the European Society for Paediatric Dermatology
• the European Dermatology Forum.

Fondation René Touraine supports ERN-Skin coordination team.