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Network’s activities since 2003

Mapping expertise

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Medical expertise on genodermatoses and rare skin disorders is inequally divided at the national and international levels. Consequently, patients who suffer from genodermatoses or rare skin disorders are not always guided towards top level centers. Indeed, the main issue is to give them access to higher quality of care.

The online directory created by the Genodermatoses and Rare Skin Disorders Network maps the multidisciplinary on genodermatoses and rare skin disorders.

Meet patient needs

The "Together Against Genodermatoses" study (TAG 2011) realized in 2011, has permitted to identify patient’s needs by questioning a large public composed of doctors, paramedics, patients, patient associations, patient’s families and social workers. Survey’s respondents reported on these thematics :

  • Medical expertise
  • Diagnosis techniques
  • Genetic advice
  • Recommendations
  • Patient education
  • Telemedicine
  • Research

This study has permitted to identify specialized consultations, to draw up a research projets inventory, to guide our actions and to refocus our efforts on international health care providers specialized training and on raising awareness among general public.

Training courses organisation and research support

  • Giving educational grants for medical and paramedical teams.
  • Developing national task forces (Mediterranean and Middle-Eastern countries)

Actions to raise the awareness about rare and genetic skin disorders

An art contest is organise every year since 2015. The goal is to raise the awareness among general population about the rare and genetic skin disorders issues. < click here> to discover the previous editions.
Previous themes :

  • 2019 : "Get into one’s skin"
  • 2018 : "Smile & Keep it Natural"
  • 2017 : "Everyday Heroes"
  • 2016 : "Hapiness"
  • 2015 : "Under your skin"

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