Down Syndrome: For Patients and Consumers

General Information on Down Syndrome

• National Institutes of Health (NIH):
  • The Down Syndrome Consortium, a public-private collaboration that provides a forum for promoting and foster the exchange of information on biomedical and biobehavioral research on the syndrome.
  • Genetic and Rare Diseases Information Center: Down syndrome
  • National Library of Medicine, Genetics Home Reference: What is Down syndrome?
  • National Library of Medicine, MedlinePlus: Down Syndrome
  • NCBI and Genetic Alliance Resource Partnership: Resources for Down Syndrome
  • National Human Genome Research Institute Down Syndrome Information. Their Down syndrome webpage covers diagnosis, symptoms, treatments, and clinical research related to Down syndrome.
    
    
• Centers for Disease Control and Prevention (CDC): Facts about Down Syndrome. The CDC creates information and tools that people and communities need to protect their health through health promotion; prevention of disease, injury, and disability; and preparedness for new health threats.
  
  
• The Down Syndrome Education Online site is a source for articles, books, and reports. National Dissemination Center for Children with Disabilities: Down Syndrome. This center provides a central source of information on disabilities, with programs and services for infants, children, and youth with disabilities. The website also includes information on the Individuals with Disabilities Education Act (IDEA) and research-based information on effective practices for children with disabilities.
  
  
• National Down Syndrome Congress provides information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.
  
  
• National Down Syndrome Society functions as a national advocate for the value, acceptance, and inclusion of people with Down syndrome.

Services, Resources, and Support

• Association for Children with Down Syndrome supports families affected by Down syndrome.
  
  
• Brighter Tomorrows provides supportive information for families with a child who has been diagnosed with Down syndrome.
  
  
• 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 provides resources and information for parents of children with Down syndrome.
  
  
• National Dissemination Center for Children with Disabilities provides information and resources for families with children who have disabilities.
  
  
• National Down Syndrome Congress is the country's oldest organization for people with Down syndrome, their families, and the professionals who work with them.
  
  
• National Down Syndrome Society advocates for better educational opportunities for people with Down syndrome and seeks to improve public awareness of the condition.
  
  
• Special Olympics supports events and awareness of exercise-related activities for people with disabilities, including Down syndrome.
  
  
• Parents' guides to Down syndrome:
  • Skallerup, S. J. (2009). Babies with Down syndrome: A new parents guide (3rd ed.). Bethesda, MD: Woodbine House. English and Spanish editions available at: http://www.woodbinehouse.com
  • 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: www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-87-4_A_.asp
    
    
• Canadian Down Syndrome Society provides information, advocacy, and education about Down syndrome.
  
  
• March of Dimes helps mothers have full-term pregnancies and researches the problems that threaten the health of babies.
  
  
• Down Syndrome Education International is dedicated to raising levels of educational achievement among children with Down syndrome. The organization also encourages developmental and educational research and evidence-based services improving outcomes for children with Down syndrome.
  
  
• Down Syndrome Affiliates in Action supports the growth and service capabilities of local and regional Down syndrome organizations.
  
  
• The Down Syndrome Medical Interest Group (DSMIG) hosts an annual meeting and clinical symposium for professionals who provide care to individuals with Down syndrome.

The NICHD Information Resource Center
Phone: 800­370­2943 (TTY: 888­320­6942)
Fax: 877­760­5947
Email: NICHDInformationResourceCenter@mail.nih.gov

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