1. Department of Dermatology Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC) Necker– Enfants Malades Universitary Hospital, Assistance Publique – Hôpitaux de Paris‐Centre (AP‐HP5) Paris France
2. Department of Pediatric Social Work Necker–Enfants Malades Universitary Hospital, Assistance Publique – Hôpitaux de Paris‐Centre (AP‐HP5) Paris France
3. Paris‐Est Creteil UniversityEpiDermE Créteil France
4. Transversal Unit of Therapeutic Patient Education Necker -Enfants Malades Universitary Hospital, Assistance Publique –Hôpitaux de Paris‐Centre (AP‐HP5) Paris France
5. Department of Physical Medicine Necker–Enfants Malades Universitary Hospital, Assistance Publique – Hôpitaux de Paris‐Centre (AP‐HP5) Paris France
6. Department of Dermatology AP‐HPHenri Mondor Hospital Créteil France
7. Imagine Institute Paris France
8. Paris University Paris France