- The Pierre Robin Network, a helpful site for new parents: http://www.pierrerobin.org/
- Wide Smiles, a helpful site for new parents: http://widesmiles.org/
- A newsgroup for parents of children with Pierre Robin Syndrome (PRS): http://health.groups.yahoo.com/group/pierrerobin/
- Read a mom’s story about her son with SEDC and Pierre Robin Syndrome and birth complications.
- National Institute for Health Encyclopedia page on Pierre Robin Syndrome: http://www.nlm.nih.gov/medlineplus/ency/article/001607.htm
- Emedicine article on Pierre Robin Syndrome: http://www.emedicine.com/ent/topic150.htm
- Google directory for Pierre Robin Syndrome: http://directory.google.com/Top/Health/Conditions_and_Diseases/Rare_Disorders/Pierre_Robin_Syndrome/
- List of Pierre Robin organizations from WebMD: http://webcenter.health.webmd.netscape.com/hw/raising_a_family/nord651.asp
- Money to pay for health care
Cleft Palate Information
- Cleft Palate Foundation: http://www.cleftline.org/. The Cleft Palate foundation offers information for parents, many links about Cleft Palate, and scholarships for nurses to attend their conferences
- Buy cleft palate foundation teddy bears: http://www.cleftline.org/news/bears.htm
- Read a mom’s story about her son with SEDC and Pierre Robin Syndrome and birth complications
- Link with vents, breathing tubes, and CPR for a child with a tracheotomy: http://www.makoa.org/vent/
Science Journal Article
- Cleft palate repair in spondyloepiphyseal dysplasia congenita: minimizing the risk of cervical cord compression by Tofield CE, Mackinnon CA published in Cleft Palate Craniofac J. 2003 Nov;40(6):629-31. This is a case study based on an operation on one person.