Cardio-Facio-Cutaneous Syndrome Support Network
183 Brown Road
Vestal, NY 13850
607-772-9666 (phone)
607-748-0409 (fax)
bconger@cfcsyndrome.org
http://www.cfcsyndrome.org/Our mission is to strive to help each other cope with the challenges of raising a child with a rare and often medically involved disorder. We act as a clearinghouse of information on all aspects of CFC Syndrome. We publish a quarterly newsletter, produce a brochure and CFC Parent’s Guide, private address book, host a private family computer list serve and also host a website. We host International family conferences and clinics open to families from all over the globe.
Our goal is to educate the general public, the medical profession, and government agencies by disseminating information on CFC Syndrome. We work to facilitate research on this very rare syndrome. We have a medical/scientific advisory board consisting of doctors from different regions of the world who have a committed interest in our CFC children.
We maintain the most extensive registry for CFC Syndrome patients in the world. The Registry provides resources for the study of CFC Syndrome. It maintains centralized information records on CFC Syndrome cases from around the world. Confidentiality of personal information regarding incidence, genetics, clinical course, and prognosis is provided to professionals and families. The Registry also serves to improve communication of ideas among interested researchers, and to assure rapid distribution of any new information that may benefit patients or their families. As part of this medical registry we are founding members of the Genetic Alliance BioBank. The BioBank contains the largest collection of DNA and tissue samples from CFC patients and their parents.