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
- 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.