Support Organization Links Focusing on Cleft Lip, Cleft Palate, and Other Craniofacial Conditions: Letters L-P
Support group dedicated to “creating a better tomorrow for ourselves and our children through education and public awareness”.
Organization dedicated to “improving the health of babies by preventing birth defects and infant mortality” through research, community services, education, and advocacy. It also provides individual genetic counseling to callers.
- Moebius Syndrome Community (through RareConnect)
Hosted by trusted patient advocates, this is a place where rare disease patients can connect with others globally.
The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.
Formerly the National Foundation for Facial Reconstruction, myFace addresses the plight of those with facial deformity by assuring them access to the comprehensive and highly personalized team care at the Institute of Reconstructive Plastic Surgery (IRPS) at NYU Langone Medical Center. The IRPS provides integrative, highly specialized and personalized team care to all those who request treatment, regardless of the type or severity of the anomaly, the length of treatment, or the family’s ability to afford care.
Agency of National Institutes of Health (NIH) supporting research into hearing, speech, and language issues.
Federation of organizations serving people with rare disorders and disabilities. Reports on hundreds of conditions are available.
National information and referral center providing information on disabilities and disability-related issues for families, educators, and other professionals.
Free school curriculum designed to establish a classroom climate that reduces bullying, teasing, and violence. Founded by Peter Yarrow of Peter, Paul, and Mary. Curriculum options are Grades 2-5, Grades 6-8, and camps/after-school programs.
Network of families whose children have been diagnosed with Pierre Robin Sequence/Syndrome.