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incident and followed in one the reference\u002Fcompetence centers of the FIMARAD healthcare network,\n* able to understand a survey (for child, survey should be understood by parents),\n* having given their signed consent to participate to the cohort RaDiCo-FARD (parents' consent for child).\n\nNon-inclusion criteria :\n\n* Patients, for whom regular care follow-up is not feasible with the FIMARAD healthcare network sites,\n* Unconfirmed diagnosis (according to criteria for each disease),\n* Patients (and\u002For parents) not able to understand a survey\n* Patients (and\u002For parents) not having given their signed consent to participate to the study","ALL",{"count":193,"type":194},900,"ESTIMATED","OBSERVATIONAL","The goal of this observational study is to conduct a prospective assessment of the individual Burden of 9 rare skin diseases to assess disability in the broadest sense of the term (psychological, social, economic and physical) for patients and\u002For families.\n\nTwo types of indicators will be used to reach this objective :\n\n1. an individual burden score calculated based on a burden questionnaire created specifically, approved and designed to understand the tendency to changes in care and lifestyles. The burden questionnaire should be used by patients and\u002For their family themselves in self-assessment.\n2. a descriptive analysis of all resources (medical and non-medical) used by the family unit to manage the disease.",[198,199,200,201,202,203,204,205,206],"Inherited Epidermolysis Bullosa","Ichthyosis","Ectodermal Dysplasia","Incontinentia Pigmenti","Neurofibromatosis Type 1","Albinism","Pemphigus","Mucous Membrane Pemphigoid","Palmoplantar Keratoderma","2026-02-10",{"date":209,"type":210},"2026-02-12","ACTUAL",{"date":212,"type":210},"2018-03-07",{"date":214,"type":194},"2027-03-07",{"name":5,"class":6},15]