Velo-Cardio-Facial Syndrome
See Also: DiGeorge Syndrome, Craniofacial Disorders
Who to Contact
-
Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
PO Box 874
Milltown, New Jersey 08850
(732) 238-8803
1-866-VCFSEF5
info@vcfsef.org
http://www.vcfsef.org/
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The Velo-Cardio-Facial Syndrome Educational Foundation is an organization
comprised of both professional and lay people whose purpose is to educate the
public, the scientific community, families of individuals with Velo-Cardio-Facial
syndrome, and individuals with Velo-Cardio-Facial syndrome (VCF) about this
common genetic disorder. The Foundation acts as an advocate for both patients
with VCF and the professional community treating this disorder, provides a forum
for the advancement of knowledge relevant to the diagnosis and treatment of
individuals with VCF, and provides a forum for discussion of the problems,
treatments, or achievements associated with VCF and its management.
The VCFS Educational Foundation consists of over 1300 lay and professional
members worldwide. Annual dues are used to produce and distribute literature and
educational information to the membership, including: a general information
packet regarding VCFS, a periodic newsletter, the official Foundation web site,
and such other information as determined by the board of directors and member
council, as well as directly addressing queries regarding VCFS.
Where to Go to Chat with Others
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VCFS Family
Support
A Place to Chat about VCFS/DiGeorge Syndrome
- 22q Exchange
This is a support group for families and individuals dealing with the challenges of 22q Deletion Syndrome (also know as 22q11 Deletion Syndrome, DiGeorge Syndrome or VCFS). This syndrome affects people in a wide variety of ways and we recognize the need to allow people to connect with and support each other. Therefore, we encourage open, respectful communications on all aspects of this condition.
- c22c
For families and professionals, interest in Chromosome 22.
Learn More About It
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Last Updated May 10, 2007 by rowley@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_vcfs.htm
Who to Contact