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Birth Defects: For Patients and Consumers

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For NICHD information on specific conditions, see the related A to Z topics in the right column.

General Information

  • The March of Dimes External Web Site Policy is a nonprofit organization that helps to promote full-term, healthy pregnancies and newborns through education, research funding, and advocacy. Its website includes information for women on how to decrease the chance that their infant is born prematurely or with a birth defect.
  • Medline Plus: Birth Defects offers general information on birth defects; how to prevent, detect, and cope with birth defects; and specific information on a range of medical conditions present at birth.
  • The Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities offers information on a variety of birth defects, including information on prevention, treatment, detection, and their occurrence.
  • In this video presentation created for the general public, The Role of Research in Understanding, Preventing, and Treating Birth Defects, the NICHD Director discusses research successes in preventing NTDs as well as the role of model organisms, systems biology, and genomics in understanding, preventing, and treating birth defects.
  • Pregnancy and Healthy Weight explains the link between maternal obesity and birth defects in newborns as well as describes steps that women can take to reduce the risk of birth defects in their children.
  • On its website, the American Speech-Language-Hearing Association External Web Site Policy provides information explaining communication disorders, which include disorders of speech, language, and hearing.

Information on Prenatal Screening and Testing for Birth Defects

Patient Registries

  • The National Birth Defect Registry External Web Site Policy collects information on individuals with structural and functional birth defects as well as on their parents’ health, genetics, and exposures. Information from the registry has helped to identify patterns of birth defects among children of veterans and children living in communities with toxic exposures.

Services, Resources, and Support

  • The Arc External Web Site Policy of the United States is an advocacy organization for people with IDDs and their families. The organization lobbies for public policies that will help individuals with developmental disabilities and provides supports and services, such as referrals, family support, and recreational programs.
  • The Genetic Alliance External Web Site Policy is an organization advocating for the use of genetic science to improve health. Its members include more than a thousand disease-specific advocacy organizations as well as researchers, industry, and other agencies and organizations. Its website provides links to resources about genetic testing and for people affected by genetic diseases.
  • The National Down Syndrome Society External Web Site Policy is an advocacy organization for people with this disorder. Its website offers information on Down syndrome and its treatments and resources for education, health care, and self-advocacy for people with this disorder.
  • The National Fragile X Foundation External Web Site Policy provides information on Fragile X and related disorders; information on treatments and interventions for Fragile X; information on relevant research; and resources for patients, including social networking tools.
  • National PKU News External Web Site Policy provides information on phenylketonuria (PKU) and links to relevant resources.
  • The NIH Office of Rare Diseases Research provides a range of information on various rare diseases, including condition information, information on ongoing research, and a database of patient advocacy groups.
  • The Special Olympics External Web Site Policy provides an outlet for athletic competition for people with disabilities. Its website offers information on how to get involved with the organization as a participant, coach, or other means.
  • The Spina Bifida Association of America External Web Site Policy is involved in education, advocacy, research, and service to improve the lives of people with this disorder. Its website offers informational materials and lists of resources for people affected by this disorder.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.​​

Last Updated Date: 11/30/2012
Last Reviewed Date: 11/30/2012
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