Association of Birth Defect Children, Inc. 
Charitable organization started by parents in 1982.
http://www.birthdefects.org/Cystic Hygroma
An article explaining this disorder and a support group for sharing.
http://www.cafamily.org.uk/Direct/c95.html
Children's Craniofacial Association
A national, nonprofit organization, headquartered in Dallas, Texas, dedicated to improving the quality of life for people with facial differences and their families.
http://www.ccakids.com/
