"Genodermatoses Network" is an international public health network launched in 2003 by Fondation René Touraine thanks to the support of one of its founding members: Laboratoires Pierre Fabre. This action focus on patients and families suffering from severe and rare genetic skin diseases in the Mediterranean and Middle-Eastern countries. Since 2008, this project has been developing at the European level thanks to a co-funding from the European Union, in the framework of the Public Health Programme through the Together Against Genodermatoses grant (TAG n°2007 335). TAG is a European Reference Network for Rare Diseases pilot project.
"Genodermatoses Network" Survey
To prepare the 2011 "Genodermatoses Network" Meeting, we invited health care providers and patient organizations to answer a suvey. Please click here to learn more about this survey.
Together Against Genodermatoses: "Genodermatoses Network" Meeting, 13-15 October 2011, Paris, France
The Together Against Genodermatoses meeting was organized by MAGEC – Necker, the national centre of expertise for genetic skin diseases and Fondation René Touraine at Necker – Enfants Malades Hospital in Paris under the high patronage of the French Ministry of Health. Please click here to learn more about our yearly meeting.
Genodermatoses Training Sessions, October-November 2011, Italy and Cyprus
The Clinical Genetics Department of the Cyprus Institute of Neurology and Genetics and the Makarios III Hospital held an international seminar on genodermatoses on 12-13 November in Nicosia, Cyprus. Please click here to see the programme.
The Ospedale Pediatrico Bambino Gesu and the Istituto Dermopatico dell’ Immacolata organized an international theoretical-practical course on epidermolysis bullosa on 16 November (please click here to see the programme) and a meeting about the continuity of care to patients affected by genodermatoses on 17 November (please click here to see the programme) in Rome, Italy.
TAG at the conference "European actions to improve the life of patients living with rare diseases" on 25-26 October 2011, Luxembourg
The Executive Agency for Health and Consumers (EAHC) organized this media initiative to provide an insight on what is done at the European level in the domain of rare diseases and the impact of the EU action on the daily life of concerned patients and families. Please click here to learn more about the conference "European actions to improve the life of patients living with rare diseases".
TAG at the European Symposium ’Rare Diseases a model of EU Solidarity’, 29 February 2012, Brussels, Belgium
At the European level, Rare Disease Day will seek to highlight rare diseases as a model of EU solidarity in today’s crisis-stricken Europe. In line with this initiative, EURORDIS is organising a symposium with the European Commission, in Brussels on February 29, to showcase the successes achieved over the last decade and to discuss the way forward. The European Symposium ’Rare Diseases a model of EU Solidarity’, will take place at the Residence Palace in the International Press Centre in Brussels. The TAG network will be presented. Please click here to learn more about the European Symposium ’Rare Diseases a model of EU Solidarity’.
