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The Geneskin website is built around an on-line database dedicated to rare genetic diseases of the skin. Its aim is to disseminate knowledge about these disorders and to improve their diagnosis, treatment and care. Specific sections of the site illustrate the clinical, laboratory and research aspects of various diseases. The site also provides information on training courses and meetings focused on genetic skin diseases and on joint initiatives between patients’ organizations, professionals and ethic experts in the field.
The Geneskin website is intended for both a medical and a non-medical audience, i.e. patients and their families, healthcare providers, researchers, companies and regulators. Specific services on disease features and diagnosis are addressed either to a general public or to professionals.
The Geneskin website is a comprehensive collection of clinical, laboratory and research data on five major groups of diseases mainly affecting the skin (epithelial adhesion, keratinisation, connective tissue and DNA repair disorders, and ectodermal dysplasias).
A free-access area is available to patients, their relatives and the general public. Information provided in this area includes: a general description of each group of diseases, the respective European centres offering clinical, diagnostic and research services, ongoing clinical trials, patients’ associations and related websites. News on research, regulatory and social aspects of genetic skin diseases is also provided, together with a dedicated forum.
A restricted access area is provided for professionals giving additional information on the diseases in the respective groups, e.g. a description with key clinical features, diagnostic tests and procedures, tools for laboratory diagnosis and genetic counselling.
The Geneskin website is part of a European coordination action project on rare genetic skin diseases. The project involves 32 clinical and laboratory expert groups from 27 participating legal bodies in 12 countries. For a complete list of the participants see the “Project” session
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