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I would like to take this opportunity to invite your family to join CFC International.  CFC International is a USA based Not for Profit organization, which has been established to support the needs of families and affected individuals of this disorder.  It is also committed to broadening their outreach efforts to assist all families and individuals affected by this disorder worldwide.  There are no fees to join CFC International.  Our CFC International Family Programs include:

CFC Family Registry

CFC International holds the most comprehensive worldwide registry of affected individuals with CFC syndrome.  Every number counts.  If you or someone in your family has CFC syndrome please contact us and make your numbers known. Let us provide you testing information for CFC syndrome. Upon a positive test result and completion of the registry and copies of medical reports sent in to us, you will be sent an invitation to sign up for our free and private CFC family computer list serve.

Welcome Packet

Upon completion of the CFC registry, a welcome packet will be mailed to your family.  This includes contact information, CFC brochure, Parent’s Guide and resource materials.  Since there is no fee to join CFC International, support of our members is sponsored through the kindness and generosity of our donors.

International Matching

CFC International has Regional Ambassadors!  This is a division of our registry program.  Upon registration with CFC International we will put our Regional Ambassador in touch with your family.  This regional matching helps our group grow stronger.  While internet support has served us well it is important to create alliances between families and encourage a network to increase awareness about this little known disorder in communities around the world.

CFC International List Serve

The CFC International list serve offers immediate distribution of a message to the entire CFC International community.  These messages and questions are considered and answered by fellow family members of CFC syndrome children and adults.  While CFC International does not endorse opinions as medical advice the list serve offers support and informed opinions by people who know this disease.

CFC International Newsletter

Our newsletter is published quarterly. It is also available online as well.  The CFC International Newsletter offers the most up to date news about research, family issues, educational concerns and events concerning CFC syndrome.

CFC International Family Conference

Every two years CFC International brings physicians, clinical and scientific researchers and families together.  Clinics are offered at no cost to affected children.  Families hear about research advancements directly from the researchers.  Resource materials are provided for affected families to better assist them in caring for a person with this rare disorder.

On a personal note, I am not only the Vice President and Family Liaison of CFC International, but also the proud mother of a daughter born with Cardio-Facio-Cutaneous Syndrome.  My daughter, Emily, was diagnosed with CFC syndrome at three years of age in 2000.  At that time, we had little information on CFC syndrome.  CFC International has come a long way in spreading CFC syndrome information, awareness and providing a strong support system for families.

I hope that you will consider becoming a member of CFC International.  There is power in knowledge and strength in numbers.

A warm embrace,

Molly Santa Cruz
Vice President and Family Liaison
Cardio-Facio-Cutaneous International
molly@cfcsyndrome.org
805-481-8334  (California)

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