Improve health care and social support for patients with severe and rare skin disorders
Genodermatoses & Rare Skin Disorders Network - a Fondation René Touraine’s network to improve health care and social support for patients with severe and rare skin disorders
Since 2003, the Fondation René Touraine has coordinated the Genodermatoses & Rare Skin Disorders 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.
The Genodermatoses & Rare Skin Disorders Network is involved in Europe, Mediterranean and Middle-Eastern countries. This network is open to every expert and centre involved in the management of severe genodermatoses and rare skin disorders. Join the network!
An international network to foster national initiatives
Genodermatoses & Rare Skin Disorders are the subject of a long-standing and efficient collaboration in genetics in the European, Mediterranean and the Middle-Eastern countries.
Meanwhile, many actions have been undertaken to improve health care and social life of the patients.
The Genodermatoses & Rare Skin Disorders Network aims at supporting these actions through an international network.
Fondation René Touraine has launched this cooperation project thanks to the support of Laboratoires Pierre Fabre and the involvement of dermatologists from the European, Mediterranean and Middle-Eastern countries.
From 2008 to 2011, the Genodermatoses 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).
Between 2013 and 2017, the Genodermatoses & Mediterranean Network received support from the European Academy of Dermatology and Venereology.
In 2016, in order to reflect its expansion, the FRT Genodermatoses & Mediterranean Network changed its name to the Genodermatoses & Rare Skin Disorders Network.
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.
The Genodermatoses & Rare Skin Disorders Network’s Strategy for 2018-2021
Our 2018-2021 objective is to work with other networks in the field:
- To strengthen national networks in each partner country outside the EU and to develop regional projects in the Mediterranean, Middle East, Asia and South America,
- To organize training courses for medical & paramedical teams,
- To develop the interactive directory for patients and professionals,
- To improve access to drugs, cosmetics and medical devices,
- To foster our communication.
A fruitful collaboration between the ERN-Skin and Mediterranean, Middle Eastern, Asian and South American networks should create synergies benefitting all patients. Fostering such links presents an important and exciting challenge for our future.
on rare skin diseases
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