Resources- Specific Diagnosis Card Catalog Birth Defects
Who to Contact
Association of Birth Defect Children
930 Woodcock Rd., Suite 225
Orlando, FL 32803
407-895-0802
E-mail: abdc@birthdefects.org
Web: www.birthdefects.org/
This organization was founded in 1982 to serve as a national clearinghouse to provide parents and professionals with information about birth defects and services for children with disabilities. ABDC sponsors the National Birth Defect Registry and parent matching service. ABDC also offers fact sheets, a newsletter, and information on environmental birth defects. Finally, it studies links between drugs, radiation, alcohol, chemicals, lead, mercury, dioxin and birth defects.
Eye Birth Defects Research Foundation
Mark Goodson Building
444 S. San Vicente Blvd, Suite 1102
Los Angeles, CA 90048
310-423-9640
Fax: 310-423-9649
E-mail: rabinowitzy@cshs.org
Web: www.laser-prk.com/eyebirth.htm
The purpose of this Foundation is to support both molecular genetic and surgical research into birth defects of the cornea and anterior segment of the eye, many of which result in permanent blindness if left untreated. Secondary goals include providing financial support for surgical treatment for financially disadvantaged individuals who require cornea transplantation, support of research grants at university-based academic institutions and support of genetic eye research at the Medical Genetic Birth Defects Center of the Cedars-Sinai Medical Center.
The Foundation will endeavor to solicit family pedigrees of individuals with genetic diseases affecting the cornea and support genetic research such as linkage studies to pinpoint genes causing these diseases. Ultimately, it is hoped that the Foundation can develop strategies to provide prenatal counseling and embark on gene therapy in appropriately identified individuals.
Typically, corneal and anterior segment surgery yields very poor results and surgery is extremely complex requiring many support systems in infants born with cloudy corneas. Pediatric corneal surgeons at Cedars-Sinai Medical Center have extensive experience in managing these complex problems as well as the appropriate support systems which include: pediatric anesthesia, pediatric intensive care, molecular genetic diagnostic and research laboratories, and genetic counseling services. This expertise will be marketed on a worldwide basis through brochures, videos and the Internet in order to provide unfortunate individuals who do not have access to this type of care an opportunity to prevent blindness in appropriate individuals.
Where to go to Chat with Others?
Please see the specific diagnoses listed in the Family Village Library
Learn More About It
Birth Defects Information
From the March of Dimes
Birth Defects
From the Center for Disease Control and Prevention
Medline Plus: Genetics/Birth Defects Topics
About Birth Defects
From Kids Health
Links
National Center on Birth Defects and Developmental Disabilities
Association on Birth Defect Children, Inc (ABDC)
Birth Defects Foundation- United Kingdom
National Birth Defects Registry
National Birth Defects Prevention Network