Our goal
We want every family to get what their child needs so that they can play, go to school, and grow up to become a healthy adult. We want parents and siblings to thrive too.
Our division works to improve health and quality of life for children and youth with special health care needs (CYSHCN). We provide leadership and guidance to support the estimated 13.5 million children in this country with a special health care need.
How we improve the health and quality of life for CYSCHN
We help children and families, health care professionals, and public health leaders improve the system of services and supports by:
Driving systemic improvements
Framework: We created the “Blueprint for Change for Children and Youth with Special Health Care Needs.”
Purpose: The Blueprint guides national efforts towards systemic change. This ensures better health outcomes for children and youth with special health care needs.
Ensuring health from the start
What we do: Through our newborn screening programs, we reach the nearly 4 million infants born each year.
Purpose: All newborns benefit from state programs we support. They screen for hearing, critical congenital heart defects (CCHD), and dozens of conditions identified through blood spots.
Supporting families
Connections: Our Family-to-Family Health Information Centers support families of children with special health care needs.
Coverage: These centers serve families in 59 states and territories, and through organizations who serve Indian tribes.
Addressing sickle cell disease
Impact: We serve nearly 1 in 4 people with sickle cell disease through our sickle cell disease programs.
Coverage: We provide grants that create regional networks of care, education, and social services across the United States.
Guiding national health policies
Leadership: We coordinate the Advisory Committee on Heritable Disorders in Newborns and Children.
Purpose: The committee advises the Secretary of the Department of Health and Human Services (HHS). It covers universal newborn screening tests, technologies, policies, guidelines, and standards.
Programs we manage
We have two branches within our division: the Integrated Services Branch (ISB) and the Genetics Services Branch (GSB).
Integrated Services Branch
ISB oversees programs that work to promote coordinated, comprehensive, family-centered systems of services.
- Transition for Youth with Autism and/or Epilepsy
- CYSHCN Research Network
- Early Hearing Detection and Intervention
- State and Territorial Grants Implementation and Change Center located at the National Beacon Center of Gallaudet University website
- Family Leadership in Language and Learning Center, led by Hands & Voices
- Provider Education Center
- Family Engagement and Leadership in Systems of Care
- Family-to-Family Health Information Centers (F2Fs)
- Health Care Delivery Systems Innovations for Children with Medical Complexity
- National Center for a System of Services for CYSHCN
Genetic Services Branch
GSB oversees programs that focus on using genetic and genomic information in clinical practice and supporting coordinated public health systems of services.
- Comprehensive Medical Care for Thalassemia
- Genetics
- Maternal and Child Environmental Health Network
- National Hemophilia Program
- National Hemophilia Program Coordinating Center
- Regional Hemophilia Network
- Newborn Screening
- Sickle Cell Disease
- Sickle Cell Disease Newborn Screening Follow-up Program
- Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
- Hemoglobinopathies National Coordinating Center
Contact us
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