Patients with rare skin diseases and COVID-19 virus

ERN-Skin fully supports patients and their families during this period of the COVID-19 pandemic and provides the following recommendations and information for patients with rare skin diseases

What are ERNs?

European Reference Networks (ERN) are virtual networks involving Reference Centres across Europe. They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources.

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
  • Chronicity
  • Immunosuppressive treatments leading to many comorbidities
  • Genetic predisposition

ERN Skin Board Meeting October 2019

Thank you very much for being there and sharing !

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 hard to diagnose 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.

Thematic groups

  • Autoimmune Bullous diseases

  • Severe cutaneous drug reactions

  • Inherited Epidermolysis Bullosa and skin fragility syndromes

  • Ectodermal Dysplasias including Incontinentia Pigmenti and p63-associated disorders

  • Ichthyosis and Palmoplantar Keratoderma

  • Cutaneous Mosaic Disorders : – Naevi & Naevoid skin disorders – Complex vascular malformations and vascular tumors

  • Cutaneous diseases related do DNA repair disorders

  • Mendelian connective tissue disorders

  • Acquired immunologicaL LOw prevalence and Complex AdulT diseases of thE SKIN (ALLOCATE SKIN)

Associated patient organizations

As patients are the primary beneficiaries of the ERN-Skin, they are also closely involved in its workings. The ERN-Skin is involved with 20 patient associations. Members of these associations make up the Patient Representative Council (PRC), which provides the ERN with patient-centric strategic orientations.