Craniofacial Anomalies & Cleft Palate Clinic : Patient Resources
The Medical University of South Carolina (MUSC) Craniofacial Anomalies and Cleft Lip and Palate Center in Charleston offers a list of resources to help you and your family cope with facial differences:
Variety of Conditions:
AboutFace
A nonprofit support network for facial difference. Their resources include newsletters, videos, and publications.
The Alliance of Genetic Support Groups
Over 350 member organizations joined together for education, advocacy and public awareness. Free packets and many books for sale.
The American Cleft Palate Craniofacial Association (ACPA)
Dedicated to all aspects of facial birth defects, this 53-year-old international network of professionals includes over 30 disciplines. With all aspects of patient and family care being represented, they are working to establish standard guidelines for care and for fair insurance coverage. They are encouraging the team approach to the care of all patients.
The Caring Connection's Peer Parent Support Program
This pilot project is supported by Children's Rehabilitative Services (CRS) and the Medical University of South Carolina Children's Hospital Fund. The mission of the program is to provide families whose children receive care at the Medical University of South Carolina with trained, caring Peer Parents on site during their hospital visit. Phone 843-876-1505.
The Cleft Palate Foundation (CPF)
This public service and education foundation provides services to patients and families.
Craniofacial Foundation of America
Their extensive web site is a graphical consumer's guide to many craniofacial surgical procedures.
FACES - The National Craniofacial Association
Travel funding and booklets
Family Connection of South Carolina, Inc.
Funded through BabyNet, this early intervention program connects families whose child or children have developmental delays with parents trained to help. Families eligible for services through BabyNet may participate in this program.
Genetic Resources
The Genetic and Rare Diseases Information Center
March of Dimes Resource Center
Accurate, private, timely, one-on-one information and referral about pregnancy is offered to parents and professions.
National Information Center for Children and Youth With Disabilities (NICHCY)
Free information on disabilities and disability related issues, personal response to your questions, Spanish resources available.
National Organization for Rare Disorders (NORD)
Educational link for organizations and individuals concerned with a rare disorder.
National Organization on Disability (NOD)
A nonprofit network dedicated to promoting the full and equal community participation of all people with disabilities In-depth programs that find the barriers and develop programs that will bring change.
The Smile Train
Provides free cleft surgery and related treatment for children who would otherwise never receive it.
Specific Conditions:
Apert Syndrome
Apert Support and Information Network. Provides support through newsletter "APERT NEWS", and networking list for parents in the United States plus several other countries.
Carpenter Syndrome
Carpenter Syndrome Network
Cleft Lip/Palate
Charleston Clefts, Inc.
Cleft Palate Foundation (CPF)
Cleft Lip and Cleft Palate - Feeding the Newborn (video) Phone: 416-813-7490
Rotary International - Thousand Smiles Foundation
Craniosynostosis
Craniosynostosis and Parents Support, Inc. (CAPS, Inc.) Phone: 877-686-2277
Crouzon Syndrome
Crouzon Support Network
Freeman-Sheldon Syndrome
Freeman-Sheldon Parent Support Group Resources
Goldenhar Syndrome
Goldenhar Syndrome Support Network
Moebius Syndrome
Moebius Syndrome Foundation
Moebius Syndrome Network
Nager and Miller Syndromes
Foundation for Nager and Miller Syndromes
Pierre Robin Sequence
Pierre Robin Network
Stickler
Stickler Involved People
Treacher Collins Syndrome
Treacher Collins Foundation
Vascular Birthmarks
Hemangiona Hope
Vascular Birthmarks Foundation
Velo-Cardio-Facial Syndrome
Northeast VCFS Support Group
