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Birth Defects Monitoring Program

The North Carolina Birth Defects Monitoring Program has compiled the following list of organizations that may be helpful to those seeking more information about birth defects or support services for affected families.

Disclaimer: Links to organizations outside of the North Carolina Department of Health and Human Services (NC-DHHS) are provided for information only and do not indicate any form of endorsement or approval by the North Carolina Division of Public Health. The NCBDMP has no control over the information provided at these sites. Views and opinions of these organizations are not necessarily those of NCDHHS, the Division of Public Health, or the NCBDMP.

Support Services

Family Support Network of North Carolina External link

  • Promotes and provides support for families with children who have special needs, including birth defects.

North Carolina Healthy Start Foundation External link

  • Information, referral and advocacy for families with questions about pregnancy or children. Also provides information, screening and referrals for pregnant and parenting women who are substance users.

National Organization for Rare Diseases (NORD) External link

  • NORD is a unique federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. Serves as the primary non-governmental clearinghouse for information on rare disorders. NORD also provides referrals, support groups and other sources of assistance.

Genetic Counseling

National Society of Genetic Counselors External link

  • Helps families find genetic counselors in their area.

Birth Defects Information - General

March of Dimes External link
919-781-2481 (North Carolina Chapter)

  • The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality through research, community services, education and advocacy.

Centers for Disease Control and Prevention (CDC) External link
800-CDC-INFO (800-232-4636); TTY: (888) 232-6348

  • The CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to identify the causes of and prevent birth defects and developmental disabilities. This site includes basic information about birth defects, prevention of birth defects, monitoring and research about birth defects, and information about how genetics affect birth defects.

National Birth Defects Prevention Network External link

  • The NBDPN maintains a national network of state and population-based programs for birth defects surveillance and research to (1) assess the impact of birth defects upon children, families and health care; (2) to identify factors that can be used to develop primary prevention strategies; and (3) to assist families and their providers in secondary disabilities prevention.

MotherToBaby External link

  • A service of the non-profit Organization of Teratology Information Specialists - Provides educational information on specific medications and other prenatal exposures and their potential risks during pregnancy. Provides fact sheets for the public (in English, Spanish and French) on various exposures during pregnancy and lactation that are potential reproductive

Birth Defects Information - Specific

Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support (CHERUBS) External link
919-610-0129 (Wake Forest, N.C.)

  • Provides information, awareness and support for families affected by CDH.

Children’s Heart Foundation External link

  • Works to improve and prolong the lives of CHD survivors and to prevent future congenital heart defects. This site provides information and advocacy for families affected by CHD.

Cleft Palate Foundation External link
1-800-24-CLEFT (1-800-242-5338) (919-933-9044 Chapel Hill, N.C.)

  • Provides essential information and research to enhance the quality of life for individuals affected by cleft lip and palate and other facial birth defects.

Spina Bifida Association External link

  • Provides information, awareness and support for children and adults affected by spina bifida.

National Down Syndrome Society External link
1-800-221-4602 (multi-lingual helpline)

  • Works to benefit people with Down Syndrome and their families through national leadership in education, research and advocacy. This site provides information, awareness and support for children and adults affected by Down Syndrome.

National Organization on Fetal Alcohol Syndrome External link
1-800-66-NO-FAS (1-800-666-6327)

  • Provides information, advocacy and support for families affected by FAS. Also provides referrals, resources and information on a broad range of alcohol and pregnancy services through a national clearinghouse.