CFC Syndrom e.V.
CFC Syndrome e.V. was founded in Duderstadt (Germany) in 2002 after the first children with CFC syndrome became known. The reason for this was the sparse information that existed at that time on the multifaceted syndrome. This information was to be bundled in one place so that parents with a newly received diagnosis could find help quickly. Because the syndrome is very diverse and varied, it was important to bring parents with the same symptoms together so that they could help each other. In the meantime, the association has made it its task to provide information about the rare genetic CFC syndrome throughout the German-speaking world and to bring families together, e.g. through an annual family meeting. In 2002, there were only about 5 families known in Germany, but today the association has 34 member families. However, the association is aware of about 100 families in German-speaking countries. The number of unreported cases, especially in those born before 2002, is correspondingly high, as the CFC syndrome has only been genetically detectable since 2006. Before that, it was a suspected eye diagnosis by experienced human geneticists. Our goal is to continue networking with medical specialists, medical competence clinics, research groups, national and international organisations in order to advance research and to promote early treatment options for this CFC syndrome.
