词条 | Children's Craniofacial Association |
释义 |
The Children's Craniofacial Association (CCA) is a United States based nonprofit organization whose mission is to empower and give hope to individuals and families with facial anomalies. CCA is a family support organization recognized by governmental, educational and medical healthcare agencies across the US.[1] [2][3]Children's Craniofacial Association's National Spokesperson is actor, entertainer CherCher became CCA's National Spokesperson in 1990. In 1985, Cher starred in the movie Mask,a film about the life of Rocky Dennis, who had a rare craniofacial condition called Craniodiaphyseal Dysplasia. Cher attended an event in Washington, DC in September 1990, where families affected by craniofacial conditions testified before the House Budget Committee. During that week, she joined ten families on a visit to the White House hosted by then, First Lady, Barbara Bush. During her Love Hurts, Believe and Farewell Tours, Cher often invited children with craniofacial conditions back stage to visit. Programs and ServicesFamily NetworkingFamilies who are affected by facial differences feel alone and isolated. CCA puts families in contact with others having similar experiences for the purpose of reciprocal support. Annual Cher's Family RetreatDuring a late night visit in Washington, DC with several craniofacial families Cher suggested an annual meeting be held where families could get together to share information and support. In 1991, Children's Craniofacial Association held its first Annual Cher's Family Retreat at Disney World in Florida. Since then subsequent retreats have been held each year in various cities across the United States. Financial AssistanceCCA had a financial assistance program that covers costs of food, travel and lodging for families who must travel to receive medical care. PublicationsQuarterly NewsletterCCA publishes a quarterly newsletter containing articles written by craniofacial surgeons, healthcare providers, family members and others. Syndrome BookletsA Guide To Understanding Apert Syndrome A Guide To Understanding Cleft Lip and Palate A Guide To Understanding Craniosynostosis A Guide To Understanding Crouzon Syndrome A Guide To Understanding Facial Palsy A Guide To Understanding Fibrous Dysplasia A Guide To Understanding Frontonasal Dysplasia A Guide To Understanding Hemangiomas A Guide To Understanding Hemifacial Microsomia A Guide To Understanding Microtia A Guide To Understanding Moebius Syndrome A Guide To Understanding Pfeiffer Syndrome A Guide To Understanding Pierre Robin Sequence A Guide To Understanding Treacher Collins Syndrome One Page OverviewsSleep Apnea What to Expect When Your Child Goes to Surgery What to Bring to the Hospital Parents: You are the Official Care Manager! Empowering Children to Cope with Teasing Apert Feet A Parent's Journey to Acceptance Anthropology and Craniofacial Anomalies Cleidocranial Dysplasia Dramatically Increasing the Quality of Life with Prosthestic Devices Hydrocephalus Tips on Dealing With An External Distraction Device Fostering Tolerance: Ways Parents and Kids Can Stand Up to Bullying References1. ^http://www.ninds.nih.gov/find_people/voluntary_orgs/volorg858.htm 2. ^http://www.uic.edu/com/surgery/plastic/patient_craniofacial.htm Members of the Center also work closely with national organizations such as AboutFace USA, The Children's Craniofacial Association, FACES, The National Foundation of Ectodermal Dysplasia, the Cleft Palate Foundation, and The Smile Train to provide resources and support for patients with facial differences and their family members. 3. ^http://www.kumc.edu/gec/support/facial_d.html External links
1 : Medical and health organizations based in Texas |
随便看 |
开放百科全书收录14589846条英语、德语、日语等多语种百科知识,基本涵盖了大多数领域的百科知识,是一部内容自由、开放的电子版国际百科全书。