CFC Family Registry
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 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.
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.
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