Amniotic Band Syndrome
Information and personal stories
A Yahoo group
About ABS and its many manifestations, including cleft lip and palate
Adams-Oliver Syndrome
From the Natinal Institutes of Health
Incudes information and support organization information
Mark A Crowe, MD, Author, University of Washington School of Medicine
Apert Syndrome
From the Children's Craniofacial Association
Discusses similarities between Apert and Crouzons
www.apert.org
Correspond with other Apert families
Arhinia
An incredible website!
Beckwith-Wiedemann
From the Pediatric Database (refers to midface hypoplasia)
Information and support includes on-line support group
Birthmarks/Hemangiomas/Vascular Malformations
Information on hemangiomas and vascular malformations
Information, resources and support
Frequently asked questions, treatment resources and more
Aiding families in the diagnosis and treatment of hemangiomas/vascular malformations
Support and information on medical treatment of birthmarks and hemangiomas
Personal stories and links to information on treatment, make-up and more!
Co-authored by Jeffrey S Zapalac, MD and John E McClay, MD
By Bert W. O'Malley, MD
Information, educational links and message board
Case studies on various vascular anomalies
Branchio-Oculo-Facial Syndrome
From the National Institutes of Health
From the National Organization for Rare Disorders (NORD)
From the Journal of Medical Genetics
From the Indian Journal of Pediatrics
Charge Syndrome
Information and support
References and Clinical Synopsis
On-line parent/patient support
Craniofrontonaso Dysplasia
Craniosynostosis
Includes information on craniosynostosis and a mentoring program
Special section of the plagiocephaly.org website
Craniosynostosis And Positional Plagiocephaly Support
Information from the Children's Hospital and Health System, Wisconsin
Crouzon Syndrome (Craniofacial Dysostosis)
Information and support for Crouzons patients and families
Ultrasound photographs
A Cleft Palate Foundation publication, also available in print
Discusses similarities between Crouzons and Aperts
DiGeorge Syndrome (Also See VeloCardioFacial Syndrome)
An overview of characteristics and treatment
From the Pediatric Database
From the National Institute of Health/national Library of Medicine
Relating to DiGeorge Syndrome/VCFS
Parent education and support
A Place to Chat about VCFS/DiGeorge Syndrome
Chicagoland area parent/patient group
Ectodermal Dysplasia
Information and support, including packet available by mail
Articles about the Society and about Ectodermal Dysplasia
On-line version is also available in print
Investigators identify a gene within region of the X chromosome
Website for families with children with congenital hand anomalies
Freeman-Sheldon Syndrome (Craniocarpotarsal Dysplasia)
From FACES - the National Craniofacial Association
Information and support
A personal website with lots of great information, support and photos
Frontonasal Dysplasia
Article describes anomalies associated with median facial cleft syndrome
Goldenhar Syndrome
Includes medical definitions and associated conditions
National Organization for Rare Disorders, Inc.
From Johns Hopkins University
By Philippe Jeanty, MD, PhD & Sandra R Silva, MD
From the World Craniofacial Foundation
Hemangiomas (See Birthmarks/Hemangiomas/Vascular Malformations)
Hemifacial Microsomia
From the Children's Craniofacial Association
Holoprosencephaly
From the National Institutes of Health
Includes information and a parent outreach group and many resources
Joubert Syndrome
From the National Institute of Neurological Disorders and Stroke
Information and support resource
Kabuki Syndrome
Translations to Spanish, Italian, Portugese and German
On-line networking of families
Klippel Feil
From the National Institute of Neurological Disorders and Stroke
Includes photographs and a case report
Information and links about KFS and related anomalies
Educational links and support group information included
Macrognathia
Micrognathia
Article provided by the University of Maryland Medical System
Resource information and family support
On-line discussion group offers support and insight
Microtia
A forum for people with, and parents of children with aural atresia and/or microtia
From the Children's Craniofacial Association
From the Microtia - Congenital Ear Institute
Miller Syndrome
Genetic testing, information and photo gallery
Moebius Syndrome
Local and regional support, conferences, etc.
From FACES
Parent guide and personal stories
Nager Syndrome
Genetic testing, information and photo gallery
Noonan Syndrome
Oral-Facial-Digital Syndrome
A summary of OFD1 characteristics and genetics information
Select entries from OMIM; links include case studies
National Institutes of Health
Pierre-Robin
From the Cleft Palate Foundation
Resource information and family support
On-line discussion group offers support and insight
From FACES: The National Craniofacial Association
Pfeiffer
An overview
The Skull Base Program
Retrognathia
Saethre-Chotzen
From the National Institutes of Health
From the Seattle Children's Hospital
Personal website includes journal references and support links
A Yahoo group
Shprintzen Syndrome (See VeloCardioFacial Syndrome)
Smith-Lemli-Opitz Syndrome (SLOS)
Definition, information and resource links
Advocacy and Exchange
From the National Institutes of Health
A Yahoo group
Parent and patient support
Stickler Syndrome
Definition, information and resource links
Information, links and personal stories
Treacher Collins
Family networking, annual retreat
For families, individuals, and professionals
From kidsplasticsurgery.org
Read Amie's personal story
Common questions and answers
From the Children's Craniofaical Association
Vanderwoude
From the NIDCR
From the University of Iowa
Vascular Malformations (See Birthmarks/Hemangiomas/Vascular Malformations)
VeloCardioFacial Syndrome (Shprintzen Syndrome)
National organization founded by parents
At Children's Hospital of Philadelphia (CHOP)
Regional organization founded by parents
Authored by Robert Ardinger, Jr, MD and Holly Ardinger, MD
Executive Director, Dr. Robert J. Shprintzen
A list of anomalies which have been found in VCFS
From the National Craniofacial Association
In Children with Chromosome 22q11.2 Deletion Syndrome
From University of Kansas Medical Center
From Stanford University
Fact sheet from the National Institute on Deafness
The 22q11 Group
Listed by state
Country-by-country information
Edited by James N. Parker and Philip M. Parker
Purchase from Amazon.com through this link to help support cleftAdvocate
Veopharyngeal Insufficiency (VPI) (See the Learn More page)
More information about specific conditions
Supporting individuals with genetic conditions and their families
National Information Center for Children and Youth with Disabilities
We subscribe to the HONcode principles of The Health On Net Foundation
This cleftAdvocate page was last updated March 25, 2014
Learn More - Syndromes Associated with Clefts
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