OPD Syndrome
Family Resource Network
Syndrome Specific Issues

Cleft Palate:

~Wide Smiles: Cleft lip, cleft palate and craniofacial deformities resource.

~
Cleft Palate Foundation:  a non-profit organization dedicated to optimizing the quality of life
for individuals affected by facial birth defects. It was founded by the American Cleft
Palate-Craniofacial Association in 1973 to be the public service arm of the professional
Association.

~Cleft Lip and Palate Association of Ireland: Lots of great information on feeding, speech
issues, hearing, etc.

~
Smiles: "SMILES" is a group of dedicated families who have developed a first-hand
understanding of the needs of children with cleft lip, cleft palate and craniofacial deformities.

Pierre-Robin:

~Pierre Robin Network: network of families and individuals with PRS providing information to
anyone who has an interest.

Hearing Loss/Deafness:

~Listen up Web: Website specializing in information for the deaf and hard of hearing.

~
NIDCD (National Institute on Deafness and other Communication Disorders)

~
Beginnings: For parents of children who are deaf or hard of hearing.  BEGINNINGS was
founded on the premise that parents, given accurate, objective information about hearing loss,
could make sound decisions for their child.

~
Alexander Graham Bell Association for the deaf and hard of hearing. (advocates oral
communication)

Feeding:

~g-tube.com: gastrostomy, jejunostomy, enteral feeding and other special feeding needs
support.

~
The Children's Hospital at Westmead: A great fact sheet that covers all aspects of feeding
children with cleft palates and/or cleft lip.


Craniofacial:

~Children's Craniofacial Association:  Nationally and internationally, CCA addresses the
medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial
conditions.  CCA's mission is to empower and give hope to facially disfigured children and their
families.

~
American Family Physician:  The Abnormal Fontanel

~
FACES: The National Craniofacial Association

~
Let's Face It: Facial Differences Information and Support Network

~
Friendly Faces: a resource and network for people with facial disfigurement.