Resource Links

These links are continuously updated. If you wish to have your site linked here, please contact us.

Quick Links—Our Top Facial Difference Web Sites

The American Cleft Palate-Craniofacial Association
Cleft Palate Foundation
AboutFace USA
Let's Face It
FACES: The National Craniofacial Association
Children's Craniofacial Association (CCA)
American Society of Plastic Surgeons (ASPS) and Plastic Surgery Educational Foundation (PSEF)—Information Service
Operation Smile Online
Wide Smiles—Cleft Lip and Cleft Palate Resource
National Organization for Rare Disorders (NORD)
Genetic Alliance (formerly Alliance of Genetic Support Groups
MUMS: National Parent to Parent Network
Aaron's Tracheostomy Page
The Florida Cleft Palate-Craniofacial Association

Support and Information Resources—Specific Facial Differences

APERT SYNDROME
apert.org (Teeter's page)

ATRESIA/MICROTIA
Reconstructive Ear Surgery for Microtia
Microtia Resource Guide
The Microtia And Aural Atresia Division

BECKWITH-WIEDEMANN SYNDROME
The Beckwith-Wiedemann Support Network
Beckwith-Wiedemann Syndrome Website
NORD Entry for Beckwith-Wiedemann Syndrome

BELL'S PALSY
National Institute of Neurological Disorders and Stroke (NINDS) Entry
Trigeminal Neuralgia Association

BURNS
The Phoenix Society for Burn Survivors Inc.

CANCER
National Cancer Institute
Cancer Resources Guide
The Oral Cancer Information Center
Support for People with Oral and Head and Neck Cancer
Adenoid Cystic Carcinoma Foundation
Adenoid Cystic Carcinoma Support Group (ADEN-CYST), (Association of Cancer Online Resources)
The Candlelighters Childhood Cancer Foundation
National Coalition for Cancer Survivorship (NCCS)

CHARGE SYNDROME/ASSOCIATION
CHARGE Syndrome Foundation
NORD Entry for CHARGE Syndrome

CLEFT LIP & PALATE
The American Cleft Palate-Craniofacial Association
Cleft Palate Foundation
ASPS/PSEF Information Service—Cleft Lip and Palate Surgery Information
WideSmiles—Cleft Lip and Cleft Palate Resource
• WideSmiles Kidz Club
• WideSmiles Cleft-talk
cleft.NET Cleft Lip - Cleft Palate Resource
International Institute for Birth Defects (cleft.net)
Florida Cleft Palate-Craniofacial Association
Cleft Notes

CRANIOSYNOSTOSIS
Craniosynostosis and Parents Support, Inc.

CROUZON SYNDROME<
Crouzon Support Network

DOWN SYNDROME
National Association for Down Syndrome (NADS)
National Down Syndrome Congress
National Down Syndrome Society
Trisomy 21 Foundation
Down's Syndrome Association UK

FREEMAN-SHELDON SYNDROME
Freeman-Sheldon Syndrome Parent Support Group

GOLDENHAR SYNDROME
(Hemifacial Microsomia, Ocular-Auricular-Vertebral Spectrum, First and Second Branchial Arch Syndrome)
Goldenhar Syndrome—Pediatric Database (PEDBASE)
Goldenhar Syndrome, Presented by the Goldenhar Fund
Goldenhar Information from NORD
Goldenhar Syndrome Information from OMIM
Goldenhar Syndrome with Ipsilateral Radial Defect information from OMIM
Goldenhar Syndrome
Goldenhar Syndrome Support Network
Goldenhar Syndrome Support Network Mailing List

MOEBIUS SYNDROME
Moebius Syndrome Foundation

NAGER & MILLER SYNDROMES
Foundation for Nager and Miller Syndromes

NEUROFIBROMATOSIS
National Neurofibromatosis Foundation
Neurofibromatosis, Incorporated (NFI)

NEVUS
Nevus Outreach

ORAL FACIAL DIGITAL SYNDROME
NORD Entry for Oral Facial Digital Syndrome

PARRY-ROMBERGS SYNDROME
The Romberg's Connection
NORD Entry for Parry-Romberg Syndrome

PIERRE ROBIN SEQUENCE
Pierre Robin Network

PROTEUS SYNDROME
Proteus Syndrome Foundation

SAETHRE-CHOTZEN SYNDROME
National Institutes of Health Entry for Saethre-Chotzen Syndrome

SCLERODERMA
Scleroderma Foundation

STICKLER SYNDROME
Stickler Involved People Official Web Site

STURGE WEBER SYNDROME
The Sturge-Weber Foundation
NORD Entry for Sturge Weber Syndrome

TMJ
TMJ Association Limited

11;22 TRANSLOCATION
Unbalanced 11/22 Translocation

TREACHER COLLINS SYNDROME
Treacher Collins Foundation
TreacherCollins.org (Amie Osborn's Web site)
Treacher Collins Family Support Group
Treacher Collins Syndrome, A Personal View (Vicki Oliver-Macklin's Web site)

VASCULAR BIRTHMARKS
(Sturge-Weber Syndrome, Hemangiomas, and Port Wine Stains)
Vascular Birthmark Foundation
Sturge-Weber Foundation
Hemangioma Newsline
Birthmarks and Hemangiomas InterNETwork Support
Hemangioma Hope
Cystic Hygroma and Hemangioma Online Support Group
Gianna's Wild Strawberry

VELO-CARDIO-FACIAL SYNDROME (VCFS)
Shprintzen Syndrome, 22q11.2 deletion, DiGeorge Sequence)
Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
Velo-Cardio-Facial - DiGeorge Family Support Group of Washington
Velo-Cardio-Facial Syndrome Information Page
Velo-Cardio-Facial Syndrome Research Program

VON HIPPEL LINDAU
Von Hippel Lindau Family Alliance

Information Resources for Related Topics

SPEECH
American Speech-Language-Hearing Association (ASHA)
American Academy of Audiology
Virtual Tour of the Ear: Audiologic Rehabilitation
Singular Publishing Group—Publisher for Communication Sciences and Disorders

DEAF & HARD OF HEARING
Deaf World Web
American Society for Deaf Children
International Hearing Society (IHS)
Self Help for the Hard of Hearing (SHHH)
Hearing Alliance of America—Hearing Loss Information
Better Hearing Institute's Hearing Help-On-Line
House Ear Institute
Other Hearing Related Sites
Where do we go from Hear?
Harris Communications, Products for Deaf and Hard of Hearing People
Western Institute for the Deaf and Hard of Hearing—Provide Products, Services, and Programs

HEARING AID
Audiology Net's Hearing Aid Information
Hearing Aid Info
How Hearing Aids Work
Hearing Aid Research Laboratory
Hearing Aids: Overpriced?

BLINDNESS & VISUAL IMPAIRMENT
American Foundation for the Blind (AFB)
National Association for Parents of the Visually Impaired (NAPVI)
The Library of Congress National Library Service for the Blind and Physically Handicapped

HEART CONDITIONS
Congenital Heart Anomalies Support, Education, & Resources, Inc. (CHASER, Inc.)

TRACHEOSTOMY
Aaron's Tracheostomy Page
Learner Manged Designs, Inc Video on Home Trach Care for Children
Passy-Muir Tracheostomy & Ventilator Speaking Valves
Bivona
Synagis Safe And Effective For Prevention of RSV Infection

DEVELOPMENTAL DISABILITIES
The Arc—The National Organization of and for People with Mental Retardation and Related Disabilities and Their Families
The Center for Enriched Living (CEL)—Social Skill Development and Recreational Programs
Florida Developmental Disabilities Council (FDDC)

Support Organizations, Networks, and Resources for Families

CranioSupport.com
National Organization for Rare Disorders (NORD)
Canadian Organization for Rare Disorders (CORD)
Genetic Alliance (formerly Alliance of Genetic Support Groups)
The American Cleft Palate-Craniofacial Association (ACPA)
Cleft Palate Foundation (CPF)
AboutFace International
AboutFace USA
Let's Face It
FACES: The National Craniofacial Association
Children's Craniofacial Association (CCA)
American Society of Plastic Surgeons Plastic Surgery Information Service
Operation Smile Online
The Florida Cleft Palate-Craniofacial Association (FCPA)
Prescription Parents, Inc.—Cleft Lip and Palate Network in New England
MUMS: National Parent to Parent Network
Parents Helping Parents—The Family Resource Center (PHP)
National Parent Consortium
The National Parent Network on Disabilities (NPND)
The Family Network on Disabilties of Florida (FND)
Family Voices—Speaking for Children with Special Health Care Needs
Family Village—Disability-Related Resources
National Health Information Center (NHIC)
U.S. Department of Health & Human Services
HealthFinder—Consumer Health and Human Services Information
Association for the Care of Children's Health (ACCH)
The National Information Center for Children and Youth with Disabilities (NICHCY)
• NICHCY Guide to Other Disability Information Centers
• NICHCY Parent Guides
National Center for Youth with Disabilities (NCYD)
Parent Advocacy Coalition for Educational Rights (PACER)
Family & Advocates Partnership for Education (FAPE)
Washington PAVE—Parents are Vital in Education
Sibling Support Project; Seattle, WA
Sibling Information Network; Storrs, CT
Ability Online
Face the Future
Support Works
American Self-Help Clearinghouse Self-Help Sourcebook
Institute for Family-Centered Care
The National Women's Health Information Center (NWHIC)
Insure Kids Now Children's Health Insurance Program
Birth Defect Research for Children, Inc.
The National Committee on Vital and Health Statistics
Easter Seals
March of Dimes

Resources for Health Care Professionals and Educators

The American Cleft Palate-Craniofacial Association
Cleft Palate Foundation
The American Board of Plastic Surgery, Inc.
American Society of Plastic Surgeons (ASPS) and Plastic Surgery Educational Foundation (PSEF)—Information Service
International Confederation for Plastic, Reconstructive and Aesthetic Surgery (IPRAS)
International Plastic, Reconstructive and Aesthetic Foundation (IPRAF)
National Institute of Dental & Craniofacial Research (NIDCR)
National Oral Health Information Clearinghouse (NOHIC)
Surgeon General's Conference on Children & Oral Health
American Association of Pediatrics
Pediatric Mental Health
American Academy of Otolaryngology—Head and Neck Surgery, Inc (AAO-HNS)
Institute for Child Health Policy
National Health Information Center
The National Information Center for Children and Youth with Disabilities (NICHCY)
Learner Managed Designs, Inc—health and education resources for children with special needs
Educational Videos for Kids that Support Children with Physical Differences
Institute for Family-Centered Care
Academy for Educational Development
National Center for Education in Maternal and Child Health (NCEMCH)
Association for the Care of Children's Health (ACCH)
National Organization for Rare Disorders (NORD)
Genetic Alliance (formerly Alliance of Genetic Support Groups
National Library of Medicine: Health Information Resources
National Library of Medicine: Medline
National Library of Medicine: DIRLINE—Directory of Health Organizations
National Library of Medicine: LOCATORplus
Welcome to PubMed
OMNI:Organising Medical Networked Information
HealthFinder—Consumer Health and Human Services Information
Health Information Megasites
Medical Matrix
BioSites
MedWeb@Emory University
The Health Channel
The Visible Human Project

Foundations/Support Organizations Affiliated with Specific Craniofacial Teams

Forward Face: The Charity for Children with Craniofacial Conditions (New York)
National Foundation for Facial Reconstruction (New York)
Craniofacial Foundation of America (Tennessee)
International Craniofacial Institute Cleft Lip and Palate Treatment Center (Texas)
Smiles (Virginia)
Life Enhancement Association for People (LEAP) (Texas)

Genetic Information

Genetic Alliance (formerly Alliance of Genetic Support Groups
Rare Genetic Diseases In Children Homepage
Genetic Education Center
National Organization for Rare Disorders (NORD)
Canadian Organization for Rare Disorders (CORD)
Online Mendelian Inheritance in Man (OMIM)
Human Genome Project

Current Research Studies

Searching for the Genes That Cause Cleft Lip and Palate (Ohio State University)
Velo-Cardio-Facial Syndrome Research Program