Velo-Cardio-Facial Syndrome (VCFS)

• Who to Contact
• Where to Go to Chat with Others
• Learn More About It
• Web Sites
• Search Google for "Velo-Cardio-Facial Syndrome (VCFS)"

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/

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

• 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

• VCFS - from OMIM Data Base
• Educating the Child with Velo-Cardio-Facial Syndrome
  
• Velocardiofacial Syndrome
  From the National Institutes of Health
• Frequently Asked Questions about VCFS
  
• Velocardiofacial Syndrome from Cincinnati Children's Hospital Medical Center

Web Sites

• Velo-Cardio-Facial Syndrome and DiGeorge Syndrome
• Velo-Cardio-Facial Syndrome Educational Foundation
• Velo-Cardio-Facial Syndrome
• 22q & You Newsletter
• Support Group for Chromosome 22 Related Disorders

• The 22q11 Group - United Kingdom
  
• Familias 22Q11 Argentina
  
• The 22q11 Deletion Syndrome Society of Sweden
  
• Generation22 - French

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Last Updated November 25, 2008 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_vcfs.htm