Down Syndrome: For Patients and Consumers

General Information

• National Institute on Aging publication: Alzheimer's Disease in People with Down Syndrome
  This fact sheet describes the connection between the two conditions and current and future research on the topic.
• Genetic and Rare Diseases Information Center
  This NIH site provides information about Down syndrome, its treatment, healthcare services and organizations that can help, and ongoing research. Readers can also submit questions about Down syndrome.
• National Library of Medicine (NLM)
  The NLM, part of the NIH, is the world's largest biomedical library and provides a variety of resources for the public.
  • Genetics Home Reference
    What is Down syndrome? provides information about the genetics of Down syndrome and links for further information.
  • MedlinePlus
    Down Syndrome provides lists of authoritative websites with information about various aspects of Down syndrome.
• National Human Genome Research Institute
  Down Syndrome Information covers diagnosis, symptoms, treatments, and clinical research related to Down syndrome.
• Centers for Disease Control and Prevention (CDC)
  Facts about Down Syndrome provides basic information about Down syndrome and links to useful resources.
• Down Syndrome Education Online
  This site is a source for articles, books, and reports about Down syndrome.
• American College of Obstetricians and Gynecologists
  This professional society offers a series of fact sheets about various topics related to women's reproductive health, pregnancy, and birth, including this fact sheet on prenatal testing and screening for birth defects .

Services, Resources, and Support

• Safe Return to School For All summarizes current evidence and best practices to help administrators, educators, and families and students—including students with disabilities—return to school safely in the context of COVID-19. The information provided is based on collaborative research from the NICHD-funded Washington University Intellectual and Developmental Disabilities Research Center, the University of Missouri-Kansas City Institute of Human Development, and the Kennedy Krieger Institute (Maryland), in collaboration with the Special School District of St. Louis County, Missouri.
• National Down Syndrome Congress
  The Congress's website provides information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.
  • New and Expectant Parents provides helpful resources for parents who have or are expecting a newborn with Down syndrome.
• National Down Syndrome Society (NDSS)
  The Society functions as a national advocate for the value, acceptance, and inclusion of people with Down syndrome.
  • Alzheimer's Disease & Down Syndrome: A Practical Guidebook for Caregivers
    NDSS wrote this booklet to help educate families and caregivers about the connection between Down syndrome and Alzheimer's disease and to provide guidance on how to evaluate, adapt, and thrive when a diagnosis is made.
• Down Syndrome Consortium
  This public–private collaboration provides a forum for promoting and fostering the exchange of information on biomedical and biobehavioral research on the syndrome.
• DS-Connect^®
  DS-Connect^® is an NIH-supported Down syndrome registry. The registry allows people with Down syndrome and their family members, researchers, and parent and support groups to share information and health history in a safe and confidential online database.
• Association for Children with Down Syndrome
  The association supports families affected by Down syndrome.
• Down Syndrome Education International
  This organization provides evidence-based information and guidance about education for people with Down syndrome to families, professionals, and organizations around the world.
• Early Intervention Support
  Early Intervention Support provides information on early interventions for children with Down syndrome and helps parents find local early intervention programs in their state.
• Family Voices
  Family Voices provides information on family-centered care for all children and youth with special health care needs and/or disabilities.
• Global Down Syndrome Foundation (GDSF)
  GDSF works to improve the lives of people with Down syndrome through research, medical care, education, and advocacy.
• Kennedy Krieger Institute Down Syndrome Clinic and Research Center (DSCRC)
  The DSCRC conducts research and offers services for people with Down syndrome.
• National Association for Down Syndrome
  This organization provides resources and information for parents of children with Down syndrome.
• Special Olympics
  The Special Olympics supports events and awareness of exercise-related activities for people with disabilities, including Down syndrome.
• The following parents' guides may be of interest:
  • Skallerup, S. J. (2009). Babies with Down syndrome: A new parents guide (3rd ed.). Bethesda, MD: Woodbine House. English and Spanish editions available at: https://www.woodbinehouse.com
  • Pueschel, S. M. (2001). A parent's guide to Down syndrome: Toward a brighter future. Bethesda, MD: Brookes Publishing.
• Canadian Down Syndrome Society
  The Society provides information, advocacy, and education about Down syndrome.
• March of Dimes
  This organization helps mothers have full-term pregnancies and researches the problems that threaten the health of babies.
• Down Syndrome Education International
  This organization is dedicated to raising levels of educational achievement among children with Down syndrome. It also encourages developmental and educational research and evidence-based services improving outcomes for children with Down syndrome.
• Down Syndrome Affiliates in Action
  Down Syndrome Affiliates in Action supports the growth and service capabilities of local and regional Down syndrome organizations.

Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.