American Sickle Cell Anemia Association (ASCAA)

An organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling, and supportive services to individuals and families at risk for Sickle Cell Anemia.

Biotinidase Deficiency Family Support Group

A non-profit, volunteer-run support group for those affected by biotinidase deficiency.

Congenital Adrenal Hyperplasia Research Education and Support

An organization that seeks to advance quality health care through support, advocacy, education, and research related to Congenital Adrenal Hyperplasia.

Children’s PKU Network

A non-profit organization dedicated to helping people with Phenylketonuria (PKU) and other metabolic disorders.

The Cochrane Cystic Fibrosis & Genetic Disorders Review Group

An international network of healthcare professionals, researchers, and consumers dedicated to the betterment of treatment for Cystic Fibrosis and other genetic disorders.

Cystic Fibrosis Foundation

A non-profit foundation dedicated to finding a cure for Cystic Fibrosis and to improving the quality of life of those with the disease.

Family Friendly Health and Recreation Topics

Tips and support for families with children who have special needs.

Fatty Oxidation Disorder Family Support Group

A volunteer support group that serves as a forum for the sharing of ideas related to Fatty-Acid Oxidation Disorders (FOD).

International Organization of Glutaric Acidemia (IOGA)

An international, voluntary, non-profit organization dedicated to the early detection and treatment of Glutaric Acidemia Type 1 (GA1) and other neurological and metabolic disorders.

Immune Deficiency Foundation

Since 1980, the Immune Deficiency Foundation (IDF) has provided accurate and timely information for the nearly quarter-million Americans who have been diagnosed with a primary immunodeficiency disease. Today, thousands of individuals and families affected by primary immunodeficiency diseases depend on IDF for advocacy, education, and empowerment.

MSUD Family Support Group

A non-profit organization dedicated to the families affected by MSUD.

National PKU Alliance

A collaboration of PKU community members joining together to support local efforts to raise PKU awareness and to drive advocacy and education, while ultimately looking for a cure.

National Urea Cycle Disorders Foundation

A non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF is a nationally-recognized resource of information and education for families and healthcare professionals.

NKH - International Family Network (Nonketotic Hyperglycinemia)

A network of parents with children with Nonketotic Hyperglycinemia (NKH), a rare and still-incurable metabolic disorder.

Organic Acidemia Association

A volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders.

Galactosemia Foundation

A national, non-profit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

The Propionic Acidemia Foundation

The Propionic Acidemia Foundation is a non-profit organization dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Sudden Infant Death Syndrome and Other Infant Death Information Website (SIDS/IOD)

A not-for-profit, voluntary agency that provides information and support to families affected by Sudden Infant Death Syndrome (SIDS).

SIDS Resources

Private, not-for-profit network that connects people to programs, services and information relating to Sudden Infant Death Syndrome (SIDS) in Missouri and surrounding counties.

United Mitochondrial Disease Foundation

United Mitochondrial Disease Foundation’s mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

SCID, Angels for Life Foundation

SCID, Angels for Life Foundation is a non-profit voluntary foundation that provides information and support to families affected by Severe Combined Immune Deficiency (SCID). We are dedicated to helping implement newborn screening for SCID in all 50 states so no more babies have to die from this treatable disease.

Learn more about newborn screening, which disorders are screened for in your state, and other frequently asked questions. More

Pregnant Families

Learn what it means when your baby initially screens positive for a disorder. What questions should you ask your doctor? What resources are available? More

Initial Positive Screens

Find support groups for and learn more about your baby’s disorder, learn about additional resources available to you and your family. More

Families with Diagnoses

Access Save Babies Through Screening Foundation's extensive links to resources available to support you, learn about screenable disorders. More


Newborn screening saves babies, one foot at a time.

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