Partner Links

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.

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 Family Support and Advocacy Organizations

The Arc of the United States (www.thearc.org)
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 (www.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 (www.ichp.ufl.edu/)
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 (www.medicalhomeinfo.org)
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 (www.hhs.gov/familyhistory)
This site offers an online family history tool that the user may complete and download to provide to their physician.

Genetic Counseling Resources

GeneTests (www.genetests.org)
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 (www.geneticalliance.org)
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 (www.kumc.edu/gec/geneinfo.html)
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) (www.nsgc.org)
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.

 Health Education for Physicians and Nurses

CMOD: Preconception Curriculum (http://www.beforeandbeyond.org/?page=cme-modules)
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 (https://oh.train.org/DesktopShell.aspx)
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 (www.marchofdimes.com/gyponline/index.bm2)
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.

Healthcare Professionals and Scientific Researchers

American Academy of Pediatrics (AAP) (www.aap.org)
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 (www.aafp.org/afp/20020615/2507.html)
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  (www.cdc.gov/genomics/hugenet/default.htm)
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 (www.icbdsr.org)
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 (www.cdc.gov/mmwr/preview/mmwrhtml/rr5506a1.htm)
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) (www.nbdpn.org)
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 levels.
 
National Center for Biotechnology Information (www.ncbi.nlm.nih.gov)
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) (www.childhealthdata.org/learn/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) (www.cdc.gov/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.
 

 Preconception Health

CDC Preconception Health (www.cdc.gov/preconception/index.html)
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  (www.cdc.gov/ncbddd/folicacid)
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  (http://www.cdc.gov/pregnancy/meds/treatingfortwo/index.html)
This site provides information on medication use during pregnancy.