CFC International is a volunteer,
not-for profit, self-help support group for persons and families
dealing with Cardio-Facio-Cutaneous Syndrome. Incorporated in
1999 in the state of New York, its membership has grown from
21 families in mainly the USA to now include persons from all
around the world.
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.
Each year our families become closer finding strength and courage
in each other, knowing that we are a growing genetic core family
whose connection lies at the very core of human existence. If you
are interested in membership or further information please contact
us.
Caring, Facilitating and Connecting
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