Clinical Research Directory

Inclusion criteria : * adults or children with a confirmed diagnosis of one of the 9 following rare skin disease: Inherited epidermolysis bullosa, Ichthyosis, Ectodermal dysplasia, Incontinetia Pigmenti, Neurofibromatosis type 1, Albinism, Pemphigus, Mucous membrane pemphigoid or Palmoplantar keratoderma. * prevalent or incident and followed in one the reference/competence centers of the FIMARAD healthcare network, * able to understand a survey (for child, survey should be understood by parents), * having given their signed consent to participate to the cohort RaDiCo-FARD (parents' consent for child). Non-inclusion criteria : * Patients, for whom regular care follow-up is not feasible with the FIMARAD healthcare network sites, * Unconfirmed diagnosis (according to criteria for each disease), * Patients (and/or parents) not able to understand a survey * Patients (and/or parents) not having given their signed consent to participate to the study