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A Community United by Cardio-Facio-Cutaneous Syndrome

Welcome to the official website for Cardio-Facio-Cutaneous International.  CFC International was incorporated in 1999 as a support group for families and others whose lives are touched by this very rare syndrome.  Our goal is to be a source of information so that we can raise awareness and educate the public, the medical community as well as families about Cardio-Facio-Cutaneous Syndrome.  We invite you to take a closer look at who we are, what we do, and how you can support our efforts.

What is Cardiofaciocutaneous (CFC) syndrome?

CFC syndrome is a rare genetic condition that typically affects the heart (cardio-), facial features (facio-) and skin (cutaneous).  It is seen with equal frequency in males and females and across all ethnic groups.  Children with CFC syndrome may have certain features that suggest the diagnosis, such as relatively large head size, down-slanting eyes, sparse eyebrows, curly hair, areas of thickened or scaly skin, and small stature.   Most will also have a heart defect.  Read more...
NEW! CFC families are invited to attend the Costello/CFC conference this fall in London. To register, click here. With the success of the 2009 conference which was our 6th conference held in the USA, the International Costello Syndrome Support group in the UK is pleased to announce their first UK conference. The event will be held in London at a venue yet to be announced.
NEW! What matters? When families affected by a rare disorder meet, it’s powerfully clear. An essay and photos by CFC Mom Jennifer Bishop covering her experiences at the 2009 CFC International Conference in San Francisco.
NEW! October 2009 Newsletter. In this edition: Why I Go, Message from the President, Donations, CFC International Joins NDRI Biorepository, Incidence, Severity and Prognosis of Cardiac Disease in CFC Syndrome, Photo Gallery, Genetic Syndromes of the Ras/MAPK Pathway, Bone in CFC Syndrome, National DNA Day at Binghamton High School, The “Rasopathies” Enter a New Era, and The NeuroCardioFacio Cutaneous Syndromes.
NEW! Raise money for CFC through GoodSearch and GoodShop. Click here to find out more.
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Hello and welcome to our community!
Receiving the diagnosis of cardio-facio-cutaneous (CFC) syndrome may seem overwhelming right now, however, over time, you will realize that your child’s diagnosis will have changed your family’s lives for the better. You may be feeling confused, sad, fearful, and angry, all at the same time.
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GeneTests is a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons. At this site are online publications of expert-authored disease reviews, an international directory of genetic testing laboratories, an international directory of genetics and prenatal diagnosis clinics and other educational materials. For more information on genetic testing for CFC Syndrome click here
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Cardiofaciocutaneous SyndromeCFC International Cardiofaciocutaneous Syndrome
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