Newborn Screening Materials and Resources:
Related Websites

On this page:
Newborn Screening Websites
Provider Websites
Disorder-Specific Websites
Hearing Loss Websites
Family Support Websites

The following websites can serve as resources for families and providers who wish to learn more about newborn screening and the disorders on the newborn screening panel. Feel free to contact us at 800-664-7772 with any further questions.

Newborn Screening Websites

Baby’s First Test 
This site provides detailed information about newborn screening for families and health care providers. It provides up to date newborn screening news and allows families to connect with others through social media.

March of Dimes
As part of their mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality, the March of Dimes provides information about newborn screening.

Midwest Genetics Network (MGN) Region 4
Region 4 Midwest Genetics Collaborative is a network of families, genetic service providers, newborn screening laboratories, and leaders in public health genetics from Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin.

Save Babies Through Screening Foundation
Save Babies Through Screening Foundation is dedicated to improving the lives of babies by working to prevent disabilities and early death resulting from disorders detectable through newborn screening.

Provider Websites

GeneReviews 
GeneReviews is a medical genetics information resource developed for physicians, genetic counselors, other health care providers, and researchers.

Minnesota Early Hearing Detection and Intervention
Serves as a tool to improve communication among Early Hearing Detection and Intervention (EHDI) providers and between providers and families to eliminate loss to follow-up and assure a sound beginning for Minnesota infants.

National Center for Hearing Assessment and Management (NCHAM)
NCHAM serves as the National Resource Center for the implementation and improvement of comprehensive and effective Early Hearing Detection and Intervention (EHDI) systems.

National Institute on Deafness and Other Communication Disorders (NIDCD)
The NIDCD, part of the National Institutes of Health (NIH), conducts and supports research in the normal and disordered processes of hearing, balance, taste, smell, voice, speech, and language.

Newborn Screening ACT Sheets
ACT sheets are PDF documents created for physicians and other health care providers responsible for following up on abnormal newborn screen results. These sheets provide the recommended follow-up for a given condition on the newborn screening panel.

OMIM
OMIM is an online catalog of human genes and genetic disorders.

Disorder-Specific Websites

Cure SMA
This site funds and directs comprehensive research towards treatment and care of spinal muscular atrophy (SMA) and provides support to families.

Cystic Fibrosis Foundation 
This site provides families and providers with up-to-date information about cystic fibrosis. The CF Foundation is dedicated to supporting the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.

Fatty Acid Oxidation Family Support Group
The FOD Group website and online 'Communication Network' Newsletters are intended to be used as a worldwide resource for families, friends, clinicians, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a fatty acid oxidation disorder.

Immune Deficiency Foundation (IDF) 
IDF was founded by families of children with primary immunodeficiency diseases and their physicians to help provide accurate and timely information and resources.

National Organization for Rare Disorders
This site provides information for both families and health care providers on rare disorders.

National Urea Cycle Disorders Foundation 
The National Urea Cycle Disorders Foundation is a nonprofit organization serving as a primary resource of information and education to families and medical professionals.

Minnesota PKU Foundation 
The Minnesota PKU Foundation is a nonprofit charity established in 1984 to promote research and the welfare of individuals with PKU and their families.

Organic Acidemia Foundation 
This foundation is a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders.

SCID, Angels for Life 
SCID, Angels for Life strives to increase awareness, benefit research, and provide parent and family education for those affected by severe combined immunodeficiency.

Sickle Cell Disease Association of America (SCDAA) 
The mission of SCDAA is to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure.

Sickle Cell Foundation of Minnesota
The Sickle Cell Foundation of Minnesota is a non-profit organization that was formed in response to a long-standing need for a community-based organization with programs and services that serve the needs of the sickle cell community and provide a supportive system of advocacy, education, and health care accountability.

Hearing Loss Websites

BoysTown National Research Hospital – My Baby’s Hearing Babyhearing.org was developed by a team of professionals at Boys Town National Research Hospital. This site provides information on newborn hearing screening for both professionals and parents.

Hear and Now
This site provides information for parents and health care providers on newborn hearing screening and hearing loss.

Minnesota Hands & Voices
Minnesota Hands & Voices is dedicated to providing a variety of support services to families of children who have been recently identified as deaf or hard of hearing, as well as families further along in their journey.

Family Support Websites

Family-to-Family Health Information (PACER)
PACER’s Family-to-Family Health Information Center (F2F HIC) provides a central source for families of children and young adults with special health care needs and disabilities to obtain support, advocacy, and information about the health care system.

Minnesota Parents Know
This site provides parenting information, resources and activities to help children grow, develop and learn from birth through high school.