Our division works to improve health and quality of life for children and youth with special health care needs. We provide leadership and guidance to support the estimated 13.5 million children in this country with a special health care need.
- Our programs reach the 4,000,000 newborns that are screened each year through newborn screening programs.
- Our Family-to-Family Health Information Centers serve families in 59 states, territories, and Indian Tribes.
- About 25% of individuals with sickle cell disease are served through our sickle cell program.
- We coordinate the Advisory Committee on Heritable Disorders in Newborns and Children that advises the Secretary of the Department of Health and Human Services (HHS) on the application of 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).
ISB oversees programs that work to promote coordinated, comprehensive, family-centered systems of services. ISB manages programs such as:
- Advancing Systems of Services for Children and Youth with Special Health Care Needs (CYSHCN)
- Children and youth with epilepsy
- Innovations in Access to Care for Children and Youth with Epilepsy
- Transforming Health Care for Children and Youth with Epilepsy
- CYSHCN Research Network
- Early Hearing Detection and Intervention
- State and Territorial Grants
- Family Leadership in Language and Learning
- Early Hearing Detection and Intervention National Technical Resource Center
- Family-to-Family Health Information Centers (F2Fs)
- Health Care Delivery Systems Innovations for Children with Medical Complexity
- National Center for Children’s Vision and Eye Health
- Vision Screening in Young Children Program
- National Center for Family and Professional Partnerships
ISB contributes, with other MCHB divisions, to our work on Autism.
GSB oversees programs that focus on using genetic and genomic information in clinical practice and supporting coordinated public health systems of services. This branch manages:
- Advances in Integrating Genetics into Clinical Care
- Regional Genetics Networks (RGNs)
- National Genetics Education and Family Support Center
- Maternal and Child Environmental Health Network
- National Hemophilia Program
- National Hemophilia Program Coordinating Center
- Regional Hemophilia Network
- Comprehensive Medical Care for Thalassemia
- Sickle cell disease (page coming second half of 2022)
- Sickle Cell Disease Newborn Screening Follow-up Program
- Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program
- Hemoglobinopathies National Coordinating Center
- Newborn screening
- Newborn Screening Family Education Program
- Newborn Screening Data Repository and Technical Assistance Center
- Newborn Screening Information Center
- Quality Improvement in Newborn Screening Program
- Innovations in Newborn Screening Interoperability Program
- Long-Term Follow-Up for Severed Combined Immunodeficiency (SCID) and other Newborn Screening Programs
Debi Sarkar, M.P.H.