Towards a European Reference Network sharing experience with Mediterranean and Middle-Eastern experts
Towards a Genodermatoses & Rare Skin Disorders European Reference Network sharing experience and knowledge with Mediterranean and Middle-Eastern experts and centres
Many actions on the national, European and international levels have been undertaken in the field of rare diseases and of severe genodermatoses.
Genodermatoses & Rare Skin Disorders at the EU level
By helping to pool scarce resources that are currently fragmented across individual European Union countries, the European Union is promoting optimal prevention, diagnosis and treatment of rare diseases by creating networks, sharing experience and training, and disseminating knowledge. Specific measures include the creation of European Reference Networks linking centres of expertise and professionals in different countries to share knowledge and identify where patients should go when expertise is unavailable in their home country.
At the EU level, multiple initiatives have been undertaken in the field of genodermatoses and rare skin disorders:
- European and international networks of patients associations do exist, such as the European Network for Ichthyosis and DEBRA International, a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB)
- Since 2003, FRT-Fondation René Touraine has developed the Genodermatoses & Rare Skin Disorders Network based on patient needs in European, Mediterranean and Middle-Eastern countries
- From 2005 to 2008, Geneskin was funded by the European Commission, with the aim to advance diagnosis, management and awareness of genodermatoses.
- In 2006, the EADV Genodermatoses Task Force was created (coordinated by H. Hintner and G. Zambruno)
- From 2008 to 2011, the European Commission co-funded through the TAG project, the FRT-Fondation René Touraine Genodermatoses & Rare Skin Disorders Network as a European Reference Network for Rare Diseases pilot project, a first step towards the development of a European Reference Network for Genodermatoses & Rare Skin Disorders.
- Since 2012, EB-Clinet (coordinated by EB Academy - EB Haus Austria) is a model clinical network of centres and experts on a specific disease, Epidermolysis Bullosa.
- In 2013, the European Academy of Dermatology and Venereology has accepted the project "Genodermatoses Network - Towards a Rare And Severe Skin Diseases European Reference Network sharing experience and knowledge with Mediterranean and Middle-Eastern experts and centres", for a 3-year funding.
Genodermatoses & Rare Skin Disorders at the Mediterranean and Middle-Eastern levels
Thanks to a long-standing and efficient collaboration in the field of molecular genetic research, South Mediterranean and Middle-Eastern countries have contributed a lot to genetic research.
Moreover, numerous initiatives have been undertaken to improve the quality of care, to promote information and training, to reinforce ties with Ministries of Health and Social Affairs, non governmental organizations, regional offices of international organizations, patient’s associations, to spur the development of national plans and programmes, to support research.
In 2003, FRT launched the Genodermatoses & Rare Skin Disorders in Mediterranean program thanks to the support of Laboratoires Pierre Fabre and the involvement of dermatologists, scientists, politicians, public health officials from the Mediterranean and Middle-Eastern countries, The first aim of the network was to promote and strengthen these actions through international cooperation.
As the network expanded, the Genodermatoses & Rare Skin Disorders in Mediterranean changed his name in 2011 to Genodermatoses & Rare Skin Disorders Network.
Ichthyosis Awareness Month 2019 : more than ever needed