The aim of the ERN-Skin is to improve the quality, safety, and access to highly specialized healthcare for children and adults with rare, low prevalence and undiagnosed skin disorders and to bolster research in the field.
56 healthcare providers endorsed by their national authority from 18 countries committed to pool their knowledge and expertise within the framework of the ERN-Skin, coordinated by the Department of Dermatology, Hôpital Necker Enfants Malades, Paris, France, with the support of Fondation René Touraine-FRT.
Rare and Undiagnosed Skin Diseases are numerous and heterogeneous with approximately over 600 conditions. They have in common:
- Misdiagnosis due to poor skin knowledge among healthcare provider
- Ignorance regarding the management of skin symptoms
- Lack of training of paramedical teams for the management of altered skin
- Poor recognition of the skin alteration as a handicap
- Poor social integration of patient
- Life-threatening diseases
- Immunosuppressive treatments leading to many comorbidities
- Genetic predisposition
To tackle these issues, the ERN-Skin is organised following a double approach:
- A disease approach with sub-thematic groups on high level patient management and research
- A transversal approach focusing on Teaching and Training, e-health, Registries and Research, Deep phenotyping, Clinical Outcomes