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Learn about the main issues that make genodermatoses and rare skin disorders a public health priority

Patients and Families Difficulties

Patients and families have to face health care and social challenges such as

  • late diagnosis (many cases are still undiagnosed or misdiagnosed)
  • difficulty to mobilize the necessary skills and expertise,
  • lack of awareness of the existence of centers specialized in the treatment of these diseases,
  • obstacles to the identification of community medical and paramedical resources,
  • insufficient coordination between physicians and hospitals,
  • insufficiently trained caregivers,
  • limited access to information affecting authorities, MDs, patients and their families, etc.
  • no effective cure but only possible prevention strategies and treatment helping to manage symptoms
  • difficult access to medicines and medical devices
  • social life is very hard for the patients and their families: access to school, to work, and to leisure activities is almost impossible

Numerous intiatives

Numerous initiatives have been undertaken to improve the quality of health care and social support for patients suffering from severe skin diseases in the Member States and in South Mediterranean and Middle-Eastern countries where genodermatoses are more prevalent.
While waiting for the outcome of genetic research, these different initiatives underline the importance of:

  • multidisciplinary health care
  • syptomatic treatment
  • exchange of expertise and ressources
  • involving public health authorities

Importance of multidisciplinary health care

The health care involves many specialties (dermatology, otolaryngology, pediatrics, gynecology, urology, ophthalmology, oncology, plastic and maxillofacial surgery, gastroenterology, nephrology, radiology, radiotherapy, odontology, nutrition, etc.) and the access to medicines and medical devices is expensive.

Importance of symptomatic treatment

Only symptomatic treatments are available and they are of major importance to improve the quality of the life of the patients.

Share expertise and resources

Developing European collaborations and sharing of expertise and resources for the delivery of health care in the field of genodermatoses will allow to:

  • overcome the limited experience of professionals,
  • improve the access to treatment requiring a particular concentration of resources and expertise,
  • provide training for health professionals,
  • spread best practice and help small countries.

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"
  • More than 1 000 trained specialists
  • 20 e-training on genodermatoses
  • 50 grants to young medical teams
  • 16 international expert meetings & workshops
  • Key role at the EU level (TAG 2007-335, EUCERD, EADV Task Force, ERN-Skin)
  • Interactive directory, click here to discover the directory

The Genodermatoses & Rare Skin Disorders Network’s Strategy for 2018-2021

Our 2018-2021 objective is to work with other networks in the field :
To strengthen national networks in each partner country outside the EU and to develop regional projects in the Mediterranean, Middle East, Asia and South America,

  • To organize training courses for medical & paramedical teams,
  • To develop the interactive directory for patients and professionals,
  • To improve access to drugs, cosmetics and medical devices,
  • To foster our communication.

A fruitful collaboration between the ERN-Skin and Mediterranean, Middle Eastern, Asian and South American networks should create synergies benefitting all patients. Fostering such links presents an important and exciting challenge for our future.

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Resources directory
on rare skin diseases

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