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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.
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