Amniotic Band Syndrome

Amniotic Band Syndrome
Information and personal stories
ABS Support Network
A Yahoo group
The ClubFoot Club
About ABS and its many manifestations, including cleft lip and palate

Adams-Oliver Syndrome

Adams-Oliver Syndrome
From the Natinal Institutes of Health
Adams-Oliver Syndrome
Incudes information and support organization information
Aplasia Cutis Congenita
Mark A Crowe, MD, Author, University of Washington School of Medicine

Apert Syndrome

A Guide to Understanding Apert Syndrome
From the Children's Craniofacial Association
Apert Overview
Discusses similarities between Apert and Crouzons
Teeter's Page
The Apert Listserv
Correspond with other Apert families


Simply Kristi
An incredible website!


Beckwith-Wiedemann Syndrome
From the Pediatric Database (refers to midface hypoplasia)
The Beckwith-Wiedemann Support Group
Information and support includes on-line support group
Beckwith-Wiedemann Group UK

Birthmarks/Hemangiomas/Vascular Malformations

The Hemangioma Treatment Foundation
Information on hemangiomas and vascular malformations
Vascular Birthmarks Foundation
Information, resources and support
Frequently asked questions, treatment resources and more
National Organization of Vascular Anomalies
Aiding families in the diagnosis and treatment of hemangiomas/vascular malformations
Birthmarks and Hemangiomas InterNETwork Support
Support and information on medical treatment of birthmarks and hemangiomas
My Port Wine Stain
Personal stories and links to information on treatment, make-up and more!
Skin Tumors, Vascular Lesions, Face and Neck
Co-authored by Jeffrey S Zapalac, MD and John E McClay, MD
Hemangiomas of the Head and Neck
By Bert W. O'Malley, MD
Tarheel Hemangioma Support
Information, educational links and message board
Case studies on various vascular anomalies

Branchio-Oculo-Facial Syndrome

Branchio-Oculo-Facial (BOF) Syndrome (BOFS)
From the National Institutes of Health
Branchio Oculo Facial Syndrome
From the National Organization for Rare Disorders (NORD)
Branchio-oculo-facial syndrome & branchio-otic/branchio-oto-renal syndromes
From the Journal of Medical Genetics
Branchio-oculo-facial syndrome
From the Indian Journal of Pediatrics

Charge Syndrome

GE Syndrome Foundation
Information and support
CHARGE Association
References and Clinical Synopsis
CHARGE Support Group
On-line parent/patient support

Craniofrontonaso Dysplasia


The Jorge Posada Foundation for Craniosynostosis
Includes information on craniosynostosis and a mentoring program
Special section of the website
Craniosynostosis And Positional Plagiocephaly Support
What is craniosynostosis?
Information from the Children's Hospital and Health System, Wisconsin

Crouzon Syndrome (Craniofacial Dysostosis)

The Crouzon Support Network, a program of AmeriFace
Information and support for Crouzons patients and families
Fetus with Crouzon Syndrome
Ultrasound photographs
Crouzon Syndrome
A Cleft Palate Foundation publication, also available in print
Crouzon Overview
Discusses similarities between Crouzons and Aperts

DiGeorge Syndrome (Also See VeloCardioFacial Syndrome)

DiGeorge Syndrome
An overview of characteristics and treatment
DiGeorge Anomaly
From the Pediatric Database
DiGeorge Syndrome
From the National Institute of Health/national Library of Medicine
The History of the 22q11.2 Deletion
Relating to DiGeorge Syndrome/VCFS
Chromosome 22 Central
Parent education and support
VCFS Family Support
A Place to Chat about VCFS/DiGeorge Syndrome
22q11 Chicagoland Area Group
Chicagoland area parent/patient group

Ectodermal Dysplasia

National Foundation for Ectodermal Dysplasias
Information and support, including packet available by mail
Ectodermal Dysplasia Society
Articles about the Society and about Ectodermal Dysplasia
The Multi-Syndrome Guide to the Ectodermal Dysplasias
On-line version is also available in print
Gene for Anhidrotic Ectodermal Dysplasia Identified
Investigators identify a gene within region of the X chromosome
On The Other Hand
Website for families with children with congenital hand anomalies

Freeman-Sheldon Syndrome (Craniocarpotarsal Dysplasia)

What is Freeman-Sheldon Syndrome?
From FACES - the National Craniofacial Association
Freeman Sheldon Parent Support Group
Information and support
Leah Rose
A personal website with lots of great information, support and photos

Frontonasal Dysplasia

Median Facial Plane Defects
Article describes anomalies associated with median facial cleft syndrome

Goldenhar Syndrome

Goldenhar Syndrome Support Network, a program of AmeriFace
Includes medical definitions and associated conditions
Goldenhar Syndrome (Oculo Auriculo Vertebral Spectrum)
National Organization for Rare Disorders, Inc.
Oculoauriculovertebral Dysplasia
From Johns Hopkins University
Goldenhar Syndrome
By Philippe Jeanty, MD, PhD & Sandra R Silva, MD
Goldenhar Syndrome
From the World Craniofacial Foundation

Hemangiomas  (See Birthmarks/Hemangiomas/Vascular Malformations)

Hemifacial Microsomia

A Guide to Understanding Hemifacial Microsomia
From the Children's Craniofacial Association


National Institute of Neurological Disorders and Stroke
From the National Institutes of Health
Carter Centers for Research in Holoprosencephaly
Includes information and a parent outreach group and many resources

Joubert Syndrome

Joubert Syndrome Information
From the National Institute of Neurological Disorders and Stroke
Joubert Syndrome Foundation
Information and support resource

Kabuki Syndrome

Kabuki Syndrome Foundation
Translations to Spanish, Italian, Portugese and German
Kabuki Syndrome Network
On-line networking of families

Klippel Feil

Klippel Feil Syndrome Information
From the National Institute of Neurological Disorders and Stroke
Klippel Feil Syndrome
Includes photographs and a case report
The KFS Connection
Information and links about KFS and related anomalies
KFS Circle of Friends
Educational links and support group information included



Article provided by the University of Maryland Medical System
Pierre Robin Network
Resource information and family support
Jaw Distraction/Craniofacial Surgery
On-line discussion group offers support and insight


Atresia/Microtia Support
A forum for people with, and parents of children with aural atresia and/or microtia
A Guide to Understanding Hemifacial Microtia
From the Children's Craniofacial Association
From the Microtia - Congenital Ear Institute

Miller Syndrome

The Foundation for Nager & Miller Syndromes
Genetic testing, information and photo gallery

Moebius Syndrome

Moebius Syndrome Foundation
Local and regional support, conferences, etc.
What is Moebius Syndrome?
Parent guide and personal stories

Nager Syndrome

The Foundation for Nager & Miller Syndromes
Genetic testing, information and photo gallery

Noonan Syndrome

The Noonan Syndrome Support Group

Oral-Facial-Digital Syndrome

Orofaciodigital Syndrome I
A summary of OFD1 characteristics and genetics information
Select entries from OMIM; links include case studies
Office of Rare Diseases
National Institutes of Health


Information About Pierre Robin Sequence/Complex
From the Cleft Palate Foundation
Pierre Robin Network
Resource information and family support
Jaw Distraction/Craniofacial Surgery
On-line discussion group offers support and insight
Pierre Robin
From FACES: The National Craniofacial Association


Pfeiffer Syndrome
An overview
Pfeiffer Syndrome
The Skull Base Program



From the National Institutes of Health
From the Seattle Children's Hospital
What is Saethre-Chotzen Syndrome
Personal website includes journal references and support links
Saethre-Chotzen On-line Support Network
A Yahoo group

Shprintzen  Syndrome (See VeloCardioFacial Syndrome)

Smith-Lemli-Opitz Syndrome (SLOS)

Smith-Lemli-Opitz Syndrome (SLOS)
Definition, information and resource links
Smith-Lemli-Opitz Advocacy and Exchange (RSH/SLO)
Advocacy and Exchange
Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes
From the National Institutes of Health
Smith-Lemli-Opitz Syndrome (SLOS) Support Group
A Yahoo group
Smith-Lemli-Opitz Syndrome (SLOS) Angels Network
Parent and patient support

Stickler Syndrome
Definition, information and resource links
Stickler Involved People
Information, links and personal stories

Treacher Collins

Treacher Collins Connection, a program of AmeriFace
Family networking, annual retreat
Treacher Collins Foundation
For families, individuals, and professionals
Treacher Collins Syndrome
Reflections on Treacher Collins Syndrome
Read Amie's personal story
Treacher Collins Q&A
Common questions and answers
A Guide to Understanding Treacher Collins
From the Children's Craniofaical Association


Cleft Lip and Palate: Van der Woude Syndrome
From the NIDCR
Key gene in cleft lip traced
From the University of Iowa

Vascular Malformations  (See Birthmarks/Hemangiomas/Vascular Malformations)

VeloCardioFacial Syndrome (Shprintzen Syndrome)

The International 22q11.2 Deletion Syndrome Foundation
National organization founded by parents
22q and You Center
At Children's Hospital of Philadelphia (CHOP)
FACE 22 - Families Advocating for Chromosomal Education
Regional organization founded by parents
Velocardiofacial Syndrome
Authored by Robert Ardinger, Jr, MD and Holly Ardinger, MD
VeloCardioFacial Syndrome Educational Foundation
Executive Director, Dr. Robert J. Shprintzen
VeloCardioFacial Syndrome Specialist Fact Sheet
A list of anomalies which have been found in VCFS
What Is Velocardiofacial Syndrome?
From the National Craniofacial Association
Visuospatial and Numerical Cognitive Deficits
In Children with Chromosome 22q11.2 Deletion Syndrome
Velo-Cardio-Facial Syndrome Research Institute
From University of Kansas Medical Center
VeloCardioFacial Syndrome Research
From Stanford University
Velocardiofacial Syndrome
Fact sheet from the National Institute on Deafness
UK Velocardiofacial Syndrome Support Group
The 22q11 Group
VCFSEF Support Groups - United States
Listed by state
VCFSEF Support Groups - International
Country-by-country information
The Official Patient's Sourcebook on Velocardiofacial Syndrome
Edited by James N. Parker and Philip M. Parker
Purchase from through this link to help support cleftAdvocate

Veopharyngeal Insufficiency (VPI) (See the Learn More page)

More information about specific conditions
The Genetic Alliance
Supporting individuals with genetic conditions and their families
National Information Center for Children and Youth with Disabilities
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All Rights Reserved
This cleftAdvocate page was last updated March 25, 2014
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