This page provides an introduction to organizations active in newborn screening education, advocacy, research and support. It is not intended as a comprehensive survey of available resources.

Federal Government

Maternal and Child Health Bureau, Health Resources and Services Administration – Provides leadership and administers key maternal and child health programs to improve the mental and physical health, safety, and well-being of the entire maternal and child health population.

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention – Promotes health and well-being among people of all ages with disabilities.

Newborn Screening and Molecular Biology Branch, Centers for Disease Control and Prevention – Ensures high quality newborn screening testing across the country.

National Institute of Child Health & Human Development, National Institutes of Health – Conducts and supports research on topics related to the health of children, adults, families, and populations.

Office of Rare Diseases Research, National Institutes of Health – Provides information about rare disease research and patient support groups.

Nonprofit Organizations

Genetic Alliance (Babysfirsttest) – Offers a clearinghouse of information and resources on newborn screening for new parents, health professionals, industry representatives and the public.

March of Dimes – Provides resources, support and educational information to improve the health of mothers and babies.

National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives – Coordinates and provides technical assistance to seven regional collaborative groups that work to strengthen states’ capacity in genetics and newborn screening.

Save Babies Through Screening Foundation – Advocates for comprehensive newborn screening and educates parents, pediatric healthcare providers and policy makers about newborn screening benefits and resources.

Foundations

Baby Baio Angel Foundation – Builds awareness of the importance of expanded newborn screening, advocates for expanded screening and supports families affected with organic acidemia metabolic disorders.

Boomer Esiason Foundation – Funds research, raises awareness and educates about cystic fibrosis through a partnership of volunteers and leaders in the medical field and business communities.

CARES Foundation – Advances quality health care for the Congenital Adrenal Hyperplasia community through support, advocacy, education and research.

CF Foundation – Supports development of new drugs to fight cystic fibrosis, improve the quality of life for those with the condition and ultimately find a cure.

Congenital Adrenal Hyperplasia.org – Connects, educates and supports people and families living with Congenital Adrenal Hyperplasia.

Hunter’s Hope Foundation – Funds research and provides information and service linkages for Krabbe disease and related Leukodystrophies.

Immune Deficiency Foundation – Advocates, educates and supports research to improve the diagnosis and treatment of persons with primary immunodeficiency diseases.

Jeffrey Modell Foundation – Supports the early diagnosis, treatment and eventual cure of primary immunodeficiency through clinical and basic research, physician education, public awareness, advocacy, patient support and expanded newborn screening.

National Urea Cycle Disorders Foundations – Assists those affected by urea cycle disorders, supports research, and educates families, legislators and healthcare professionals.

Organic Acidemia Association – Provides families and healthcare professionals with information on organic academia metabolic disorders, funds research and supports early intervention through expanded screening.

PKU Foundation – Builds awareness of the effects of Phenylketonuria (PKU), assists families with information and resources, and raises funds for research.

Proprionic Acidemia Foundation – Funds research on Propionic Acidemia and provides information and support to families and medical professionals.

Sickle Cell Disease Association of America – Offers support to those affected by sickle cell disease and related conditions, and advocates for a cure and to improve the quality of life for those affected.

Professional Organizations

American Academy of Obstetrics and Gynecologists – Improves women’s health care through practice and research, education and advocacy.

American Academy of Pediatrics – Supports pediatricians through policy and clinical guidance, advocacy, community-based initiatives, research and education.

American College of Medical Genetics and Genomics – Provides resources for researchers studying topics in newborn screening and others in genetics or genomics.

Association of Maternal and Child Health Programs – Supports state maternal and child health programs and provides national leadership on health issues affecting women and children.

Association of State and Territorial Officials – Supports public health agencies by formulating and influencing public health policy, and ensures excellence in state-based public health practice.

Society for Inherited Metabolic Disorders – Promotes the advancement of research and medical treatment of inherited disorders of metabolism.

Others

Newborn Coalition – Advocates for newborns through partnerships and programs that enhance health care for newborns and their families.

Preserving the Future of Newborn Screening – Provides public education about newborn screening and its benefits through its broad-based coalition.