The Trisomy 21 Program

Resources for Families: Websites

CHOP Community Resource Database

The CHOP Community Resources database offers families and professionals the opportunity to see what resources for children with disabilities and illnesses are available in the region and, in some instances, across the country.
http://www.chop.edu/crf

Down Syndrome Research Foundation

The Down Syndrome Research Foundation investigates best practices, as well as initiates and participates in research studies to gain a better understanding of the learning styles of individuals with Down syndrome.
http://www.denison.edu/collaborations/dsq/recordsheet.html

Down Syndrome Pregnancy

Down Syndrome Pregnancy, Inc. is a non-profit New Jersey corporation which provides information and support to expectant parents preparing for the birth of a baby with Down syndrome. All materials are geared to non-political, honest, compassionate and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.
http://downsyndromepregnancy.org 

Down Syndrome: Health Issues

Down syndrome news and information for parents and professionals from a pediatrician who is the father of a child with Down syndrome.
http://www.ds-health.com

Eastern Pennsylvania Down Syndrome Center

A regional nonprofit organization that provides medical evaluations for children, teens and adults with Down syndrome. The site offers a list of upcoming events, an e-mail list, message board and chatroom.
http://www.epdsc.net

National Association for Down Syndrome

Provides educational resources and counseling and support for parents of infants newly-diagnosed with Down syndrome. Site offers free, downloadable newsletter and fact sheet, e-mail list, for-fee educational materials and a discussion board.
http://www.nads.org

National Down Syndrome Congress

A national advocacy organization founded in 1973. Website features a downloadable information package for new parents, a newsline and resource lists.
http://www.ndsccenter.org

National Down Syndrome Society

A national organization founded in 1979 to advance Trisomy 21 research, advocacy and education. Website features research news and study enrollment information, advocacy opportunities, searchable resource database and message boards.
http://www.ndss.org

The Special Kids Network

A Pennsylvania system that connects families with resources through a searchable online database and toll-free telephone help line.
http://www.health.state.pa.us/skn

Parent to Parent link

A parent network created by parents of children with special needs. Parents can fill out an online request form to be paired with another parent or search for local support groups.
http://www.parenttoparent.org

Parent Peer Program

This program is coordinated through Parent to Parent of Pennsylvania. It is a network of support for caregivers of individuals with Down syndrome. The purpose of the Trisomy 21 Parent Peer Program is to provide one-to-one phone support to caretakers at all stages of life for social, emotional and informational support. This program is available to caretakers of infants, kids, teens and adults with Down syndrome.

To learn more about this program or to become connected with a peer family, call 1-888-727-2706 (toll free in Pennsylvania) or 908-537-4673 in New Jersey.

Woodbine Down syndrome books

Online ordering of special needs books direct from the publisher.
http://woodbinehouse.com/down-syndrome.Down_Syndrome.0.htm

 

Date: October 2012

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