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Down Syndrome Resources

National Down Syndrome Organizations

National Down Syndrome Society (NDSS) - established in 1979 to increase public awareness about Down syndrome; to assist families in addressing the needs of children born with this genetic condition; and to sponsor and encourage scientific research.

NDSS maintains a toll-free number (1-800-221-4602) to its professionally staffed information and referral service available to people nationwide. They provide general information about Down syndrome; referral to parent support groups as well as other local and national resources; and information on many topics related to Down syndrome. A free information packet is available for new parents.

National Down Syndrome Congress (NDSC) - a national advocacy organization for Down syndrome and provides leadership in all areas of concern related to persons with Down syndrome.

Down Syndrome Research and Treatment Foundation (DSRTF) - The mission of DSRTF is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down syndrome.

Down Syndrome Research Foundation (DSRF) - The Down Syndrome Research Foundation was formed in 1995 in response to the need, expressed by parents and professionals, for detailed and research-based information for themselves and for the community at large.

The ARC - the country's largest voluntary organization committed to the welfare of all children and adults with developmental disabilities and their families.

Other Down Syndrome Resources

Down's Heart Group - A UK based charity offering support and information relating to heart conditions associated with Down's Syndrome. Their useful links page is one of the best I have found for Down syndrome resources on the web.

AHRC - The mission of AHRC is to provide opportunities and choices for children and adults with developmental disabilities to realize their potential and achieve their goals by providing an array of individual and family supports. In fufilling its mission, AHRC promotes and advocates for personal growth, satisfaction, independence and full participation in society for each individual.

Association for Children with Down Syndrome (ACDS) - Early intervention program services approximately 200 children with Down syndrome from Nassau and Suffolk counties and New York City. Various service models are available to families to meet their individual needs.

National Association for Down Syndrome (NADS) - a not-for-profit organization, was founded in Chicago in 1961 by parents of children with Down syndrome who felt a need to create a better environment and bring about understanding and acceptance of people with Down syndrome.

Down Syndrome Association of Hampton Roads (formerly the Tidewater Down Syndrome Association) - one of the best parent groups in the country. They are located in Norfolk, VA.

Riverbend Down Syndrome Parent Support Group - provides support and information to parents of children with Down syndrome in Southwestern Illinois. This is one of the better information sites we have discovered on the web.

Uno Mas! - Uno Mas! means One More! One more #21 chromosome than most folks, that is. This online support group is a place to exchange advice and information and celebrate the uniqueness of people with Down's. It's also the place to get the coolest Down Syndrome T-shirt you've ever seen!

Medical Resources

WebMD - the leading online health destination for consumers, physicians and healthcare professionals

Down Syndrome - Health Issues - a comprehensive site by Len Leshin, M.D., F.A.A.P. which includes a collection of essays about children with Down syndrome

Targeted Nutritional Intervention (TNI)

TNI (vitamin supplementation), a highly controversial subject within the Down syndrome community, has been featured on shows such as 20/20 and 48 Hours. However, there are no scientific studies that support the use of TNI in children with Down syndrome as a method to improve cognitive ability.

Nutritional Supplements for Down Syndrome: A Highly Questionable Approach by Len Leshin, M.D., F.A.C.S. - Dr. Leshin is the father of a child with Down syndrome and is a member of the Down syndrome Medical Interest Group. The owners of this web site highly recommend that parents reads this document before considering the use of vitamin supplementation.

The following are pro-TNI sites. The information that they contain should not be considered unbiased. This information is provided for informational purposes only. The owners of this web site do not endorse any vitamin supplement product.

International Nutrition, Inc - information from the manufacturers of NuTriVene-D, a nutritional supplement for those with Down Syndrome

Nutri-Chem - information from the manufacturers of MSB+, a nutritional supplement for those with Down Syndrome

Targeted Nutritional Intervention (TNI) - contains information related to Trisomy 21 Research Inc. and to TNI as is used in the treatment of children with Down Syndrome

The Cognitive Enhancement Research Institute - includes information about TNI, Piracetem, and anti-oxidants as possible treatments in Down Syndrome

This page last updated on 15 April 2008.

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Thomas and Michel Paul - Email: tom.and.michel AT gmail DOT com