SCHS: Birth Defects Monitoring Program: Other Resources
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 (NCDHHS) 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.
Early Intervention Referral Information and Resources
North Carolina Infant-Toddler Program - The Infant-Toddler Program provides support and services for families and their children, birth to three, who have special needs.
- Find Your Children’s Developmental Service Agency (CDSA)
- Eligibility and Milestones for Families
- NC ITP Referral Form
CDC: Learn the Signs. Act Early. - From birth to 5 years, your child should reach milestones in how they play, learn, speak, act and move. Track your child’s development and act early if you have a concern.
CDC: Concerned About Your Child’s Development? - Guidance on how to get help for your child by talking with your child’s doctor.
Support Services
Family Support Network of North Carolina - 1-800-852-0042; Promotes and provides support for families with children who have special needs, including birth defects.
National Organization for Rare Diseases (NORD) - 1-800-999-6673; NORD is a unique federation of voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. It also 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 - Helps families find genetic counselors in their area.
Birth Defects Information - General
March of Dimes - 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) - 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 - 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 - 1-866-626-6847; 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 on various exposures during pregnancy and lactation.
Birth Defects Information - Specific
American Cleft Palate Craniofacial Association (ACPA) - 919-933-9044 (Chapel Hill, NC); ACPA works to support the care of patients affected by cleft and craniofacial conditions. Patients require care from a variety of specialists over time, and ACPA optimizes outcomes for individuals with oral cleft and craniofacial conditions through education, support, research and interdisciplinary team care.
Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support (CHERUBS) - 919-610-0129 (Wake Forest, NC); Provides information, awareness and support for families affected by CDH.
Children’s Heart Foundation - 847-634-6474; 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.
Spina Bifida Association - 1-800-621-3141; Provides information, awareness and support for children and adults affected by spina bifida.
National Down Syndrome Society - 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.
FASD United - 202-785-4585; Provides information, advocacy and support for families affected by fetal alcohol spectrum disorders (FASD). Also provides referrals, resources and information on a broad range of alcohol and pregnancy services.
Last Modified: November 15, 2024