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.