Resources for clinicians and families

Children's Hospital Down Syndrome Program:
617-355-2209

Early Intervention: (In Massachusetts)
1-800-905-8437

Parent groups:
Massachusetts Down Syndrome Congress: 1-800-664-6372 or www.mdsc.org. The MDSC offers a First Call Program that connects new parents to other parents of children with Down syndrome.

Nationally, the National Down Syndrome Society web site maintains a directory of support groups at www.ndss.org/.

Health care guidelines:
The National Down Syndrome Society has comprehensive guidelines for managing patients with Down syndrome at www.ndss.org/.

An accompanying How-To guide is available at: www.ndss.org/.

Pamphlets and books:
"A Baby First," a pamphlet from the National Association for Down Syndrome. To order copies for patient families, go to www.nads.org and click on "Products and Publications."

Babies with Down Syndrome: A New Parents' Guide by Karen Stray Gunderson.

A Parent's Guide to Down Syndrome by Siegfried Pueschel, MD, PhD, JD, MPH.

Other up-to-date materials are available through the National Down Syndrome Congress: www.ndsccenter.org/.

	Skotko published a companion survey on prenatal Down syndrome diagnosis—with similar findings—in the March American Journal of Obstetrics and Gynecology. Motivated by this study, Sens. Edward Kennedy (D-MA) and Sam Brownback (R-KS) introduced bill S. 609 on March 16. This legislation, supported by Children's Hospital Boston, would provide $25 million in federal funding so women with prenatal test results indicating Down syndrome or other conditions can receive current, science-based information and referral to support services. For Down syndrome resources, visit www.childrenshospital.org/views/april05/downresources.html. For more information or to refer to Children's Down Syndrome Program, call 617-355-2209.