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Down Syndrome - Resources

RECOMMENDED RESOURCES FOR NEW AND EXPECTANT PARENTS

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.

RECOMMENDED RESOURCES ABOUT PRENATAL SCREENING AND TESTING

  • “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 ORGANIZATIONS

  • 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.

PROFESSIONAL GENETICS ORGANIZATIONS

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

NATIONAL DISABILITY ORGANIZATIONS

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