- What is Down syndrome and what causes it?
- What are the symptoms of Down syndrome?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
National Down Syndrome Congress
The NDSC, a membership organization, offers parent resources, including a "new parent package" of information, as well as news and events, government activities, and information on self-advocacy.
Utah Down Syndrome Foundation
A non-profit organization, established in 1977, to provide support, training, counseling, and education to individuals with Down syndrome, their parents, families, and the community. This volunteer organization has 14 chapters throughout the state.
Down Syndrome (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.
Down Syndrome (MedlinePlus)
From the National Library of Medicine and National Institutes of Health, offers many links to high-quality sources of information for patients and their families.
Down Syndrome - Health Issues
Site developed and edited/authored by a pediatrician, Len Leshin, MD, who has a son with Down syndrome. Includes a number of essays by experts about specific health topics and provides other useful links.
Down Syndrome Resources: Washington State
The Center for Children with Special Needs provides various resources for specific conditions, including Down syndrome.
Living with Down Syndrome ( 951 KB)
This 34-page document provides information about Down syndrome; family and school issues; People First and cultural issues; and more from The Down Syndrome Educational Trust.
International Foundation for Genetic Research (The Michael Fund)
Advocacy organization aimed at fund-raising for research, improving care and education of children with Down syndrome, and right-to-life issues.
The International Mosaic Down Syndrome Association
Aims to assist any family or individual whose life has been affected by mosaic Down syndrome.
Utah Parent Center
A non-profit organization that provides training, information, referral, and assistance to parents of children and youth with all disabilities including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities.
What is Down Syndrome (NDSS)
Overview of Down syndrome from the National Down Syndrome Society (NDSS).
A Parent's Guide on Puberty for Boys [for Girls] with Disabilities ( 7 KB)
A toolkit for parents to use as they choose, this publication was developed and written by Vanderbilt Leadership Education in Neurodevelopmental Disabilities (LEND) long-term trainees.
Children with Down Syndrome: Health Care Information for Families (AAP)
Guide to help parents and families of children with Down syndrome. Focuses on medical topics, by age, that affect physical health. PDF downloads available; American Academy of Pediatrics (AAP).
Dental Care for the Patient with Down Syndrome
From a paper by Dr. Elizabeth S. Pilcher, published in 1998; on the Down Syndrome: Health Issues site curated by Len Leshin, MD, FAAP.
Down Syndrome (Genetic Science Learning Center)
A brief educational overview of the genetics of Down syndrome from the Genetic Science Learning Center at the University of Utah.
Toilet Training Children with Down Syndrome (National Down Syndrome Society)
The NDSS offers this guide on their website as a guide to determine toileting readiness and teaching toileting skills. Includes simple images that may be used as visual cues. This guide may be helpful in teaching toileting skills to any child with a developmental disability.
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For other services related to this condition, browse our Services categories or search our database.
DS-Connect: The Down Syndrome Registry (NIH)
Developed by the Down Syndrome Consortium, led by the National Institutes of Health and involving several Down syndrome advocacy and professional organizations, to offer opportunities for patients/families and researchers to connect and to allow access to research data by families.
|Author:||Lisa Samson-Fang, MD - 8/2012|
|Compiled and edited by:||URLEND Trainees, 2011-2012 - 3/2012|
|Content Last Updated:||11/2015|