Meet Our Patient Representatives: Virginie Kauffman

This month we are highlighting the people behind our network. Meet Virginie, one of ERN CRANIO’s patient representatives. Virginie represent les P’tits Courageux in ERN CRANIO.

“When Théo was born, there wasn’t much information related to his rare disease, Crouzon, so with other parents in France, we decided to create a patient association. With this association, we have been able to help other families better live with a craniosynostosis such as Crouzon, Apert, and Pfeiffer. Our three main goals are to provide information and opportunities for exchange for families, increase awareness and communication about these conditions, as well as provide financial aid when needed.

Being a patient representative and participating in the ERN CRANIO allows me to see and therefore better understand the clinical perspective, what the doctors are doing for the future. I can then share these incredible advances through our association, which brings hope for the future. Seeing what other associations are doing across Europe also helps motivate and inspire new ideas for us in France.

During this month of Cleft and Craniofacial Awareness, I would like to make sure people know that they are not alone when they learn of the diagnosis of their child with a craniofacial condition. There are people who have been through this before and are there to help.”

Find out more about Les P-tits Courageux: Les P'tits Courageux