Institutional list

In France

• Social Welfare of Paris Hospitals (Assistance Publique des Hôpitaux Parisiens, AP-HP)
• College of Teachers in Dermatology of France (Collège des Enseignants en Dermatologie de France, CEDEF)
• Epidemiology in Dermatology and Evaluation of therapeutics (EpiDermE)
• Rare dermatologic diseases branch (FIlière santé Maladies RAres Dermatologiques, FIMARAD)
• Henri-Mondor University Hospitals
• Orphanet - The Rare Diseases and Orphan Drugs Portal
• French Society of Dermatology (Société Française de Dermatology, SFD)
• Paris-East Créteil University (Université Paris-Est Créteil, UPEC)

In Europe

• ERN GENTURIS network
• ERN-Skin
• European Neurofibromatosis Group (ENFG)

In the rest of the world

• Children's Tumor Foundation
• REiNS Cutaneous Neurofibroma Working Group
• Response Evaluation in Neurofibromatosis and Schwannomatosis - REiNS
• The Neurofibromatosis Therapeutic Acceleration Program (NTAP)