Resources for Families
Web sites
http://www.denison.edu/collaborations/dsq/recordsheet.html
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 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.org
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. Web site features a downloadable information package for new parents, a newsline and resource lists.
http://www.ndsccenter.org
National Down Syndrome Society
A national organziation founded in 1979 to advance Down syndrome research, advocacy and education. Web site 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
Woodbine Down syndrome books
Online ordering of special needs books direct from publisher.
http://woodbinehouse.com/down-syndrome.Down_Syndrome.0.htm
Downloadable material
"I Think I Can: A Guide to Recreation for Children and Youth with Special Needs"
Financial Planning for Your Family Member or Friend with Special Needs: Create a Special Needs Trust
Trisomy 21 Program Down Syndrome Checklist: Birth
New! Down Syndrome Health Care Guidelines
21 Transition Tips for Young Adults With Trisomy 21
From Pediatric to Adult Healthcare
Moving Into a Home of Your Own
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