Resources- Specific Diagnosis Card Catalog Birth Defects


  • Who to Contact
  • Where to Go to Chat with Others?
  • Learn More About it
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  • 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

    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)

    March of Dimes

    Birth Defects Foundation- United Kingdom

    Murdoch Institute- Australia

    National Birth Defects Registry

    National Birth Defects Prevention Network

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