Down Syndrome - Resources

All of the following materials have been reviewed by medical experts and are included in the “NSGC Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome.”

• National Center for Prenatal and Postnatal Down Syndrome Resources — downsyndromediagnosis.org
  A website with a resource directory for new and expectant parents learning about Down syndrome.
• “Understanding a Down Syndrome Diagnosis” — lettercase.org
  A booklet reviewed by representatives of national medical and Down syndrome organizations for patients first learning about a prenatal diagnosis of Down syndrome.
• “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” — downsyndromepregnancy.org
  A book and website with detailed information for new and expectant parents anticipating the birth of a child with Down syndrome.
• “A Time to Decide, A Time to Heal” — pineapplepress.org and “A Heartbreaking Choice” — aheartbreakingchoice.com:
  Books and websites for patients who do not plan on continuing a pregnancy following a prenatal diagnosis.
• “Planning for a Loving Future” and “A Loving Choice: Making an Adoption Plan” — ndsan.org
  Pamphlets and website for parents considering placing their child for adoption.
• Brighter Tomorrows — brightertomorrows.org
  A website for both new and expectant parents.
• “Facts about Down Syndrome” Center for Disease Control and Prevention (CDC) — cdc.gov
  A website with facts about Down syndrome.
• “Babies with Down Syndrome,” Edited by Susan J. Skallerup — woodbinehouse.com
  An extensive book for new parents.
• “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives,” and “What Parents Wish They’d Known: Reflections on Parenting a Child with Down Syndrome,” Ed. by Kathryn Soper — woodbinehouse.com
  Book with personal essays and quotes by new and expectant parents.
• American Academy of Pediatrics, “Health Care Information for Families of Children with Down Syndrome” — healthychildren.org
  Guidelines focused on recommended healthcare and treatment.

• “Understanding Prenatal Screening and Testing for Chromosome Conditions” — lettercase.org
• “A Patient's Guide to Understanding Non-Invasive Prenatal Testing” — nsgc.org

• National Down Syndrome Society — ndss.org
• National Down Syndrome Congress — ndsccenter.org
• International Mosaic Down Syndrome Association — imdsa.org
• Focused on Adoption
  National Down Syndrome Adoption Network — ndsan.org
• Focused on Education
  Down Syndrome Education USA — dseusa.org
• Focused on Research
  Jerome Lejeune Foundation — lejeuneusa.org, Global Down Syndrome Foundation — globaldownsyndrome.org, and Lumind Foundation — lumindfoundation.org
• DS-Connect — dsconnect.nih.gov
  Research on cognition and health can also greatly improve outcomes for people with Down syndrome in the future. DS-Connect, sponsored by The National Institutes of Health (NIH), is a voluntary registry for families who want to participate in research opportunities, receive updates on research initiatives, and be included in the collection of data about Down syndrome.

• National Society of Genetic Counselors — nsgc.org
• American College of Medical Genetics and Genomics — acmg.net

• American Association of People With Disabilities — aapd.com
• ARC — thearc.org
• Association of University Centers on Disability — aucd.org
• March of Dimes — marchofdimes.org
• Special Olympics International — specialolympics.org

Reviewed by the National Society of Genetic Counselors, Down Syndrome Information Act Working Group, with assistance from the National Center for Prenatal and Postnatal Down Syndrome Resources.

January 2016