Fondation René Touraine Genodermatoses Network Presentation
Genodermatoses Network - A pilot network to improve health care and social support for patients with severe and rare genetic skin diseases.
The Genodermatoses Network was established in 2003 thanks to the involvement of European, Mediterranean and Middle-Eastern experts. The aim of this network is to improve health care and social support for patients with genodermatoses and to promote a patient based approach.
Since 2003, the Fondation René Touraine Scientific Board has coordinated this network. The success of this network, has led to :
- the European Commission co-funding of the Genodermatoses Network (agreement n°: TAG 2007 335) as a ERN for Rare Diseases pilot project, a first step towards the development of a ERN for Genodermatoses
- the establishment of a Genodermatoses Network Committee within the Scientific Board in 2011, to supervise and develop the activities.
In 2013, the Genodermatoses Network celebrates 10 years
Since 2003, the Genodermatoses Network partners work together to improve health care and social support for patients with severe and rare skin diseases and to promote a patient based approach.
To learn more about the 2003-2012 Genodermatoses Network achievements, please click here
European Academy of Dermatology and Venereology (EADV) brings its support to the Genodermatoses Network
The European Academy of Dermatology and Venereology (EADV) is a non-profit association whose mission is to advance excellence in clinical care, research, education and training in the field of dermatology and Venereology and to act as the advocate and educator of patients particularly those with cutaneous or venereal diseases.
EADV brings its support to the Genodermatoses Network through the funding of a project to :
1. evaluate the needs of patients with genodermatoses and of their caregivers
2. strengthen links with genodermatoses experts and centres in the Mediterranean and Middle Eastern countries
3. to foster clinical and therapeutic research in the field of genodermatoses
By funding this project EADV will support a network dedicated to patients and their carers and contribute to the development of a European Reference Network for Genodermatoses.
Towards a European Reference Network for Genodermatoses
European Reference Networks (ERN) should serve as research and knowledge centres treating patients from other EU countries. From 2008 to 2011, the European commission has co-funded the Genodermatoses Network (agreement n°: TAG 2007 335) as a ERN for Rare Diseases pilot project, a first step towards the development of a ERN for Genodermatoses.
A meeting to discuss the development of a ERN for Genodermatoses will be held at the next European Academy of Dermatology and Venereology (EADV) Congress in Istanbul in Turkey, on October 5th, 2013.
To learn more about the organisation of this meeting, please contact the project manager of the Genodermatoses Network.
Host the next Genodermatoses Meeting - Call for organising country
Since 2003, an annual meeting has been held to bring together partners of the Genodermatoses Network. This meeting concerns health care and social support for patients and their families.
It is held each year in a different country to increase local awareness and to facilitate the development of a national network for genodermatoses. For the organizing country, it is a unique opportunity to strengthen the national genodermatoses community and develop links with teams and patient associations from more than 30 countries.
To learn more about the organisation of the annual meeting, please contact the project manager of the Genodermatoses Network.
Symposium on Genodermatoses: Epidermolysis Bullosa and Ichthyosis, May 31 - June 1, Lisbon, Portugal
The Hospital CUF Descobertas, the Centro Hospitalar Lisboa Norte, Debra Portugal and Aspori, the Portuguese Association for Ichthyosis Patients organised a Genodermatoses Symposium in Lisbon on May 31 - June 1 2013.
Here you can find the symposium programme