Les p'tits courageux

Virginie Kauffman represents people with a syndromic craniosynostosis within the ERN CRANIO network.

The objectives of the "Les P'tits Courageux" association, created in 2010, are as follows:
- INFORMATION: To raise awareness of syndromic craniofacial diseases.
- SUPPORT: Help families better cope with their children's hospitalization by providing financial support for certain services: medical supplies, overnight stays and travel for parents, and travel for siblings.
- DISCUSSION: Support families affected (discussion forum, e-mail, telephone, etc.) by rare diseases, which affect one child in 50,000 for Crouzon syndrome, and one child in 100,000 for Apert and Pfeiffer syndromes.
Link to website: https://www.lesptitscourageux.net/