VCFS Resources:
"The Foundation is an international not-for-profit organization dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners. The Foundation is independent of -- and not affiliated with -- any particular institution."
The Velo-Cardio Facial Syndrome International Center
University Hospital, State University of New York Upstate Medical University
"Our Center has been a magnet for people from all over the world who wish to seek the best care for their children with VCFS. Patients have come to the Center from nearly every state in the U.S. and from more than a dozen countries in Europe, Asia, Africa, and South America. Similarly, scientists from all over the world have come to study with us and observe our Center’s techniques and outcomes."
Children's Hospital of Philadelphia
"At The "22q and You" Center — established in 1996 — our goal is to provide the finest diagnosis, treatment and follow-up services to these children and their families. We also continue to lead the way in researching 22q11.2 deletion, hoping to find out more about what causes it, how it affects children and how we can make their lives even better."
The National Craniofacial Association
"We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need. Resources include newsletter, information about craniofacial conditions, and networking opportunities."
Velo-Cardio-Facial Syndrome, Volume 1
By Robert Shprintzen, Ph.D. and Karen-Golding, Kushner, Ph.D.
"With an estimated human population prevalence of 1:2000, Velo-Cardio-Facial Syndrome (VCFS) is the second-most common multiple anomaly syndrome in humans and almost all children with the syndrome have speech and language impairments that are generally recognized to be complex and difficult to treat.
"To demonstrate and to provide clinicians with expert guidance, the authors have produced a comprehensive two-volume set with a combination of text and video demonstrating the clinical features of Velo-Cardio-Facial Syndrome (VCFS); the communication phenotype in VCFS; the natural history of speech and language in VCFS; diagnostic procedures necessary for assessing speech and language disorders in VCFS; the treatment of speech and language impairment in VCFS; and outcomes, demonstrated by video on an accompanying CD-ROM to Volume 2."
