Since 2003, an annual meeting has been held to bring together partners of the Genodermatoses & Rare Skin Disorders Network. This meeting concerns health care and social support for patients and their families, not biomedical science. The meeting is organised every year in a different country to increase local awareness and foster the development of a national network for genodermatoses & rare skin disorders. The most recent meeting was organized by MAGEC, Centre de Référence pour les Maladies Génétiques à Expression Cutanée - Hôpital Necker - Enfants Malades in Paris, France in 2011. It gathered 145 participants from 25 countries.
Working groups to discuss diagnosis and therapeutics strategies
6 disease specific subgroups have been formed (epidermolysis bullosa, ichthyosis, palmoplantar keratoderma, neurofibromatosis, xeroderma pigmentosum, other genodermatoses) to discuss strategies to improve health care and social support for patients and families suffering from severe genodermatoses in different socioeconomic environments. 1 crosscutting subgroup has been formed to coordinate a laboratory network dedicated to help patients and families with antenatal diagnosis. Dermatologists, geneticists, patient representatives all participate in these groups. Each group is coordinated by both 1 non European Union Coordinator and 1 European Union Coordinator.
Training sessions supporting a multidisciplinary approach
2 training sessions at the 2010 and 2011 meetings (245 participants), 14 additional training sessions (300 participants), 15 practical training sessions for specialists and nurses in the dermatology departments of partner countries have contributed to promote a multidisciplinary approach.
Evaluating the needs of patients and health care professionals
In 2011, 67 teams from 16 countries have been involved in a survey. Practical tips, hints and know-how to improve the daily life of patients with genodermatoses have been gathered. Drugs, cosmetics, medical devices, and other products have been listed (15 categories, 1337 products). Possible consultations for patients with genodermatoses & rare skin disorders, available diagnostic techniques, genetic counselling, patient care, guidelines for care and support, training of professionals, relevant patient organisations, patient treatment guidance, epidemiological monitoring and registries, telemedicine and research project are all listed.
Fostering the development of a network of dedicated outpatient’s facilities and centres of expertise for genodermatoses & rare skin disorders patients
Thanks to the exchange of experience and the organisation of an annual meeting the Genodermatoses & Rare Skin Disorders Network has led to :
- the development of dedicated outpatient’s facilities for genodermatoses patients in multiple dermatology departments
- connections between outpatient’s facilities for genodermatoses patients and Centres of Expertise able to provide advice for diagnosis and treatment.
Promoting international collaboration
The Genodermatoses & Rare Skin Disorders Network is recognised by the EU and international agencies.
Co-funded by the European Union within the framework of the Public Health Programme from 2008 to 2011 (agreement : TAG n°2007 335), TAG is a European Reference Network of Rare Diseases pilot project.
The Genodermatoses & Rare Skin Disorders Network participates in the activities of the European Union Committee of Experts on Rare Diseases (EUCERD) and has collaboration with European and international organisations with experience in the field of rare diseases as Eurordis and Orphanet.
The Rammal Award (a medal awarded each year to a personality or an organization from one of the Mediterranean countries, who has elevated scientific exchanges in this part of the world) was awarded in 2009 to Fondation René Touraine for the Genodermatoses & Rare Skin Disorders Network.
Fostering collaboration with industry for the benefit of patients
In 2011, 67 teams from 16 countries responded to a survey on the use of drugs, medical devices, cosmetics and other products in their practice. 1337 products from 15 categories were listed.Retour ligne automatique
A round table meeting with multiple companies was held to discuss the results of this questionnaire and to create a “Club of industries”. All these companies have an interest in severe and rare genetic skin diseases. They supported the intention of collaborating to develop and support clinical and therapeutic projects to improve health care for patients with rare skin diseases, to develop and support training of medical and paramedical teams in the better use of drugs and medical devices by supporting an annual meeting.
Increasing awareness : a newsletter and a website
From 2003 to 2011, 19 issues of the Genodermatoses & Rare Skin Disorders Network Newsletter were published and sent to 900 subscribers.
on rare skin diseases
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