The information and resources listed are intended for educational use only and are provided solely as a service. The information provided should not be used for diagnosing or treating a health problem or disease, and is not a substitute for professional care. These links do not constitute an endorsement of these organizations or their programs by the National Birth Defects Prevention Network (NBDPN) and none should be inferred. The NBDPN is not responsible for the content of the individual organization web pages found at these links.
Jump to:General Birth Defects & Birth Defects DataFamily Support and Advocacy OrganizationsGenetic Counseling ResourcesPreconception HealthHealthcare Professionals and Scientific ResearchersHealth Education for Physicians and NursesPopulation-based Birth Defects Surveillance Programs
General Birth Defects & Birth Defects Data
Centers for Disease Control and Prevention (CDC) – Birth Defects
This website provides information on birth defects in general and includes subpages on specific birth defects. Centers for Disease Control and Prevention (CDC) / National Center on Birth Defects and Developmental Disabilities
This website provides information on preconception, pregnancy, birth defects, and developmental disabilities as well as CDC’s activities and recent publications related to each of these topics. March of Dimes (MOD) Foundation
This site contains a wealth of information about the March of Dimes, birth defects, and infant health statistics. March of Dimes (MOD): Peristats
PeriStats is developed by the March of Dimes Perinatal Data Center and provides access to maternal and infant health data for the United States and by state or region.National Institutes of Health - Birth Defects
This website provides updates on the latest health and scientific research conducted by NIH. The “Health Information Index” has a subject/word guide to diseases and conditions under investigation at NIH. Link to Birth Defects organizations and resources page (http://www.nichd.nih.gov/health/topics/birthdefects/Pages/default.aspx) Organization for Teratology Information Services (OTIS)
MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists, offers information about exposures to possible harmful substances during pregnancy. It contains a list of state contacts for teratology information, fact sheets on specific exposures, special projects, and links. Teratology Society
The Teratology Society website provides information on teratogens (factors or agents that adversely affect the developing baby), membership information, and links to numerous birth defects sites.
Family Support and Advocacy Organizations
The Arc of the United States
The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. This site has many resources available and has a directory of state chapters. HealthyChildren.Org
This parenting website contains general information related to child health as well as more specific guidance on parenting issues. Information regarding the American Academy of Pediatrics’ many programs and activities can also be found here. Institute for Child Health Policy
The Institute for Child Health Policy contains information on promoting the health of children, adolescents, and young adults by emphasizing factors that contribute to disparities in health and health care outcomes for minority and underserved children and youth. National Center for Medical Home Implementation (NCMHI) State Resources
The overarching goal of the NCMHI is to ensure that all children and youth have a medical home where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent. The NCMHI State Resources page provides comprehensive information for each state. Surgeon General’s Family History Initiative
This site offers an online family history tool that the user may complete and download to provide to their physician.
Genetic Counseling Resources
GeneTests is a medical knowledge database that relates genetic testing to the diagnosis, management, and genetic counseling of individuals and families with specific inherited disorders. Genetic Alliance: Advocacy, Education & Empowerment
This website is the nation’s clearinghouse for newborn screening information that contains membership information and a searchable member directory, useful health resources, newsletters, and other publications for those living with and at risk for genetic conditions. Medical Genetics, University of Kansas Medical Center
This website contains a surplus of information on many national and international birth defects and genetics/birth defects organizations, including referral information for those wishing to seek a health care professional concerning a specific birth defect or genetic disorder. National Society of Genetic Counselors (NSGC)
NSGC is the leading voice, authority, and advocate for the genetic counseling profession. The site explains the role of genetic counselors and provides contact information for genetic counselors for those seeking a referral, both nationally and internationally.
CDC Preconception Health
Learn what you need to know now to have a safe pregnancy and healthy baby with CDC’s preconception health web portal, available for women who are of reproductive age. CDC Folic Acid
This site provides information on the importance of folic acid for the prevention of birth defects in both English and Spanish language formats. Medications - Treating for two
This site provides information on medication use during pregnancy.
Healthcare Professionals and Scientific Researchers
American Academy of Pediatrics (AAP)
This website provides online access to AAP’s recommendations, research findings, and policy statements, which convey helpful tips and health information for parents and providers on all child health topics. American Family Physician
This website includes a patient handout on preconception health, including promotion of folic acid, assessment of genetic risks, congenital infections, environmental toxins, risk of prescription drug use during pregnancy, management of chronic maternal illnesses, exercise and nutrition, and psychosocial factors. HuGE Net: The Human Genome Epidemiology Network
This website provides information about the HuGE Net and peer-reviewed synopses of epidemiologic aspects of human genes, prevalence of allelic variants in different populations, population-based disease risk information, gene-environment interaction, and quantitative data on genetic tests and services. International Clearinghouse for Birth Defects Surveillance and Research
This site is dedicated to sharing data, news and views on the research, monitoring, and prevention of birth defects. It provides information about the Clearinghouse, membership directory, publications/papers, and birth defects links for professionals and general audiences. MMWR article on Preconception Health, April 21, 2006-55(RR06) 1-23
This article offers 10 recommendations to improve preconception health in the United States, which include preconception doctor visits and provision of additional care to those women who have been affected by adverse pregnancies and have identified health risks such as heart disease and diabetes. National Birth Defects Prevention Network (NBDPN)
This site offers organizational information, newsletters, a listserv, and related links to state birth defects monitoring programs and other national organizations at the local, state, and national level. National Center for Biotechnology Information
The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information. National Survey of Children with Special Health Care Needs (NS-CSHCN)
This site provides information related to the National Survey of Children's Health, which includes a subset of information that assess the prevalence and impact of special health care needs among children and collects data on indicators such as condition, impact on activity and schooling, health insurance coverage, and access. Pregnancy Risk Assessment Monitoring System (PRAMS)
PRAMS is a surveillance project of the CDC and state health departments that collects state-specific, population-based data on maternal attitudes and experiences before, during, and shortly after pregnancy. This website is a potential source for evaluating pregnancy experience regarding maternal risk factors that contribute to birth defects.
Health Education for Physicians and Nurses
MOD: Preconception Curriculum
This website is designed for physicians providing health care to women who may become pregnant. Its curriculum features a series of PowerPoint slide sets which include a core module and separate modules for each of the following four medical specialties: obstetrics/gynecology; internal medicine; family medicine; and pediatrics. Preconception Self-Study Courses
This website offers free educational self-study trainings on resources addressing some common risk factors for poor reproductive outcomes for nursing and other health care providers interested in improving the preconception and interconception health of women of childbearing age (18-44 years). MOD: Genetics & Your Practice Curriculum
This website includes a curriculum designed for health care professionals and customized for those working with preconception/prenatal, infant/children, and adolescent/adult client types. It provides an array of information on genetic testing and screening, family health and social history, and referral to genetic services.
Population-based Birth Defects Surveillance Programs
If your state birth defect surveillance program has a web site that you would like to have
listed please click here