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Down Syndrome: For Patients and Consumers

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General Information

Services, Resources, and Support

  • National Down Syndrome CongressExternal Web Site Policy
    The Congress’s website provides information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.
  • National Down Syndrome SocietyExternal Web Site Policy
    The Society functions as a national advocate for the value, acceptance, and inclusion of people with Down syndrome.
  • 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 SyndromeExternal Web Site Policy
    The association supports families affected by Down syndrome.
  • Brighter TomorrowsExternal Web Site Policy
    This organization provides supportive information for families with a child who has been diagnosed with Down syndrome.
  • Down Syndrome Education InternationalExternal Web Site Policy
    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 SupportExternal Web Site Policy
    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 VoicesExternal Web Site Policy
    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)External Web Site Policy
    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)External Web Site Policy
    The DSCRC conducts research and offers services for people with Down syndrome.
  • National Association for Down SyndromeExternal Web Site Policy
    This organization provides resources and information for parents of children with Down syndrome.
  • Special OlympicsExternal Web Site Policy
    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: External Web Site Policy
    • Pueschel, S. M. (2001). A parent's guide to Down syndrome: Toward a brighter future. Bethesda, MD: Brookes Publishing.
    • Simmons, J. (2010). The Down syndrome transition handbook: Charting your child's course to adulthood. Bethesda, MD: Woodbine House. Available at: Web Site Policy
  • Canadian Down Syndrome SocietyExternal Web Site Policy
    The Society provides information, advocacy, and education about Down syndrome.
  • March of DimesExternal Web Site Policy
    This organization helps mothers have full-term pregnancies and researches the problems that threaten the health of babies.
  • Down Syndrome Education InternationalExternal Web Site Policy
    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 ActionExternal Web Site Policy
    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.

Last Updated Date: 04/09/2014
Last Reviewed Date: 01/17/2014
Vision National Institutes of Health Home BOND National Institues of Health Home Home Storz Lab: Section on Environmental Gene Regulation Home Machner Lab: Unit on Microbial Pathogenesis Home Division of Intramural Population Health Research Home Bonifacino Lab: Section on Intracellular Protein Trafficking Home Lilly Lab: Section on Gamete Development Home Lippincott-Schwartz Lab: Section on Organelle Biology