Patient-based Registry

AFS Costello & Cardio-Facio-Cutané

Created in 2000 on the initiative of 3 families, the "Association Française des Syndromes Costello et Cardio-Facio-Cutané" brings together over 120 families affected by one of these two syndromes, throughout France and 33 other countries. Its medical committee comprises 15 members, (Bordeaux University Hospital, AP-HP Robert DEBRE, AP-HM Marseille, Montpellier University Hospital, Toulouse University Hospital), including 115 referenced professionals. It communicates with 1,000 referrers, including 200 fee-paying members.

Our actions, aimed at improving knowledge :

  • Help people with disabilities due to the Costello and CFC syndromes, and their families
  • Seek and implement the means to promote the education of children and teenagers with Costello and CFC syndromes and support research about these syndromes
  • Attend all congresses, events, conferences and meetings related to Costello and CFC syndromes in France and abroad
  • Ensure that parents meet with one another
  • Work towards strengthening the expertise of professionals and families, during a week-long meeting with lectures, exchanges and individual consultations that bring together families and doctors.
  • Promote and support the research avenues under way in many countries through information, dissemination, communication and networking.

Main contacts

Photo of Anahita Avalos
Anahita Avalos
Photo of Serge Arnoulet
Serge Arnoulet