COVID-19 Updates: Latest Information for Parents

Newborn Screening Program

Resources

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/guides/pages/120/support-for-patients-and-families

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

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)

Baby’s First Test
https://www.babysfirsttest.org/newborn-screening/states/california

  1. Primary List of Disorders Screened for in California
    (RUSP Core Conditions
    )
  2. Additional Disorders Screened for in California
    (RUSP Secondary Conditions)
  3. 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