Disorders Detectable through Screening
Important Information For Parents About the Newborn Screening Test
Medical Home Portal
Genetic and Rare Diseases Information Center
American Sickle Cell Anemia Association
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.
Cayenne Wellness Center
P.O. Box 3856
Glendale, CA 91221
Sickle Cell Disease Foundation of Orange County
Mission Viejo, CA
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.
American Thyroid Association
The MAGIC Foundation
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.
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.
Children’s PKU Network
A non-profit organization dedicated to helping people with phenylketonuria (PKU) and other metabolic disorders. http://www.pkunetwork.org/Childrens_PKU_Network/Home.html
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.
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.
A national, non-profit, volunteer organization whose mission is to provide information, support and networking opportunities to families affected by galactosemia.
MSUD Family Support Group
A non-profit organization dedicated to the families affected by MSUD.
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.
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.
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.
NKH – International Family Network (Nonketotic Hyperglycinemia)
A network of parents with children with nonketotic hyperglycinemia (NKH), a rare and still-incurable metabolic disorder.
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.
VLCAD Rage Regardless RY
Support for families affected by 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.
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). It is dedicated to helping implement newborn screening for SCID in all 50 states so no more babies have to die from this treatable disease
Lysosomal Storage Disorders
Lysosomal Disease Network
National MPS Society
Hide & Seek Foundation
United Pompe Foundation
Child Neurology Foundation
Family Friendly Health and Recreation Topics
Tips and support for families with children who have special needs.
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).
Save Babies Through Screening Foundation: One Foot at a Time
California Newborn Screening Program (NBS)
- Notice of Information and Privacy Practices
- NCAA Athletes – Sickle Cell Trait Results
- Newborn Screening Specimens Use and Storage
Baby’s First Test
- Primary List of Disorders Screened for in California
(RUSP Core Conditions)
- Additional Disorders Screened for in California
(RUSP Secondary Conditions)
- Additional Secondary Disorders Screened for in California (Additional RUSP Secondary Conditions)
Parents should submit a request for their newborn’s screening results directly to the Newborn Screening Program at NBS.Results@cdph.ca.gov.
Please provide either the NBS Form Number listed on the pink and blue copies of the Test Request Form or the following information:
- Baby’s last name
- Baby’s date of birth
- Name of the hospital of birth
- Mother’s full name and maiden name, if different
- Mother’s date of birth