For Families
Disorders Detectable through Screening
https://www.cdph.ca.gov/Programs/CFH/DGDS/Pages/nbs/NBS-Disorders-Detectable.aspx
Important Information For Parents About the Newborn Screening Test
General Information
Medical Home Portal
https://www.medicalhomeportal.org/diagnoses-and-conditions
Genetic and Rare Diseases Information Center
https://rarediseases.info.nih.gov/
Hemoglobin Disorders
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.
http://www.ascaa.org
Cayenne Wellness Center
P.O. Box 3856
Glendale, CA 91221
818-940-0079
http://cayennewellness.org
Pacific Sickle Cell Regional Collaborative
1010 West La Veta Avenue, Suite 670
Orange, CA 92868
info@c3dibd.org
https://pacificscd.org
Sickle Cell Disease Foundation of Orange County
Mission Viejo, CA
949-331-8121
https://www.facebook.com/Sickle-Cell-Foundation-of-Orange-County-132723156811100
https://www.scdfoc.org
Thalassemia
https://www.thalassemia.org
Endocrine Disorders
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.
https://www.caresfoundation.org/physician-referrals/support-groups
American Thyroid Association
https://www.thyroid.org/patient-thyroid-information/what-is-thyroid-disease
The MAGIC Foundation
https://www.magicfoundation.org
Cystic Fibrosis
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.
https://www.cff.org
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.
https://cfgd.cochrane.org/welcome
Metabolic 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.
https://www.npkua.org
ALD Life
https://www.aldlife.org/about-us/projects/support-services/
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.
https://fodsupport.org
Galactosemia Foundation
A national, non-profit, volunteer organization whose mission is to provide information, support and networking opportunities to families affected by galactosemia.
http://www.galactosemia.org
MSUD Family Support Group
A non-profit organization dedicated to the families affected by MSUD.
http://www.msud-support.org
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.
http://www.nucdf.org
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.
https://www.oaanews.org
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.
http://www.pafoundation.com
NKH – International Family Network (Nonketotic Hyperglycinemia)
A network of parents with children with nonketotic hyperglycinemia (NKH), a rare and still-incurable metabolic disorder.
http://www.nkh-network.org
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.
http://pi.umdf.org/l/346741/2017-11-02/812d
VLCAD Rage Regardless RY
Support for families affected by metabolic disorders.
https://www.rageregardlessry.org
SCID
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.
https://www.primaryimmune.org
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
http://www.scidangelsforlife.com
Lysosomal Storage Disorders
Lysosomal Disease Network
http://www.lysosomaldiseasenetwork.org/patient-advocacy-support-groups
National MPS Society
https://mpssociety.org
Hide & Seek Foundation
https://hideandseek.org
United Pompe Foundation
https://www.unitedpompe.com
Child Neurology Foundation
https://www.childneurologyfoundation.org/disorder/pompe-disease
Spinal Muscular Atrophy
Other
Family Friendly Health and Recreation Topics
Tips and support for families with children who have special needs.
http://www.family-friendly-fun.com
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).
http://sids-network.org
Save Babies Through Screening Foundation: One Foot at a Time
http://www.savebabies.org/video.html
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
https://www.babysfirsttest.org/newborn-screening/states/california
- 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)
For Parents/Legal Guardians/Clients Requesting Newborn Screening Results
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