Down Syndrome Resources

• 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, health care services and organizations that can help, and ongoing research. Readers can also submit questions about Down syndrome.
• National Library of Medicine (NLM)
  NLM, part of NIH, is the world’s largest biomedical library and provides a variety of resources for the public.
  • MedlinePlus
    Down Syndrome provides lists of authoritative websites with information about various aspects of Down syndrome.
• National Human Genome Research Institute
  About Down Syndrome 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 .
• 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 Eunice Kennedy Shriver 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 (NDSC)
  The NDSC website provides information, advocacy, and support regarding 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)
  NDSS 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 Down syndrome.
• DS-Connect^®
  DS-Connect^® is an NIH-supported Down syndrome registry. It 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.
• Early Intervention Support
  The Early Intervention Support page from Day 2 Day Parenting 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. (2008). Babies with Down syndrome: A new parents’ guide (3rd ed.). Bethesda, MD: Woodbine House.
  • Pueschel, S. M. (2001). A parent’s guide to Down syndrome: Toward a brighter future (2nd ed.). Bethesda, MD: Brookes Publishing.
• Canadian Down Syndrome Society (CDSS)
  CDSS provides information, advocacy, and education about Down syndrome.
• March of Dimes  
  March of Dimes helps mothers have full-term pregnancies and researches the problems that threaten the health of babies.
• Down Syndrome Education (DSE) International
  DSE is dedicated to raising levels of educational achievement among children with Down syndrome. It also encourages developmental and educational research and evidence-based services that improve outcomes for children with Down syndrome.
• Down Syndrome Affiliates in Action (DSAIA)  
  DSAIA 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 NICHD, NIH, or HHS.

• Down Syndrome Consortium
  The Consortium is a public–private collaboration that provides a forum for promoting the NIH Research Plan on Down Syndrome (2007) (PDF 351 KB) and fosters the exchange of information on biomedical and biobehavioral research on the syndrome. NIH published its revised plan—Down Syndrome Directions: NIH Research Plan on Down Syndrome (2014)—in November 2014.
• Visit About the Consortium to learn more about the Consortium and its members.
• The site’s DS-Connect^®: The Down Syndrome Registry page describes the Consortium’s efforts to create a national patient registry.
• NICHD Intellectual and Developmental Disabilities Branch (IDDB)
  IDDB supports research and research training focused on preventing and lessening the impact of intellectual and developmental disabilities. The branch supports biomedical, biobehavioral, and translational research in many areas related to intellectual and developmental disabilities (IDDs).
• Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers
  This NICHD program provides core infrastructure and research support for investigators with independently funded projects to understand the causes of IDDs as well as their prevention, management, and treatment through biomedical and behavioral approaches.
• National Institute of Dental and Craniofacial Research (NIDCR)
  The mission of NIDCR is to improve oral, dental, and craniofacial health through research, research training, and the dissemination of health information. NIDCR’s Practical Oral Care for People with Down Syndrome provides guidance on oral care for people with Down syndrome and links to information on care strategies related to other health areas.
• University of Maryland Brain and Tissue Bank
  Housed by the University of Maryland, Baltimore, this human tissue repository systematically collects, stores, and distributes brain and other tissues for research. It is dedicated to the improved understanding, care, and treatment of individuals with developmental disorders.
• Jackson Laboratory Cytogenetic and Down Syndrome Models Resource
  This resource maintains and distributes stocks of mouse models for Down syndrome as well as the study of chromosomal aneuploidy.
• Knockout Mouse Phenotyping Program (KOMP2)
  KOMP2 is a trans-NIH initiative that aims to generate a comprehensive and public resource composed of mouse embryonic stem cells containing a null mutation in every gene in the mouse genome.
• National Down Syndrome Society (NDSS)
  NDSS provides information on research resources, conferences, and award programs.
• LuMind IDSC Down Syndrome Foundation
  IDSC works to stimulate biomedical research that will accelerate the development of treatments to improve cognition, including memory, learning, and speech, for individuals with Down syndrome.
• Association of University Centers on Disabilities (AUCD)
  AUCD is a national network of university-based interdisciplinary centers. Members’ activities include academic training, basic and applied research, program evaluation, and dissemination of best practices.
• Linda Crnic Institute for Down Syndrome
  The institute conducts basic, translational, and clinical research and provides medical care to people with Down syndrome.
• American Association on Intellectual and Developmental Disabilities (AAIDD)
  AAIDD promotes research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
• Down Syndrome Medical Interest Group (DSMIG)
  DSMIG hosts an annual meeting and clinical symposium for professionals who provide care to individuals with Down syndrome.
• Global Down Syndrome Foundation (GDSF)
  GDSF works to improve the lives of people with Down syndrome through research, medical care, education, and advocacy.
• American Academy of Pediatrics (AAP)
  AAP publishes the journal Pediatrics, which includes articles, policies, and guidelines on Down syndrome, such as Health Supervision for Children With Down Syndrome and Oral Health Care for Children With Developmental Disabilities .

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