National Down Syndrome Congress
This organization provides information, advocacy, and support for individuals with Down syndrome.
National Down Syndrome Society
This organization advocates for the value, acceptance, and inclusion of people with Down syndrome.
International Mosaic Down Syndrome Association
This organization provides information and support for individuals with mosaic Down syndrome.
Understanding a Down syndrome Diagnosis
The Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down syndrome, and can be found at this site along with other helpful information. This booklet has been prepared with assistance from the Down Syndrome Consensus Group, which includes representative of The National Society of Genetic Counselors, The American College of Medical Genetics, The American Congress of Obstetricians and Gynecologists, The National Down Syndrome Society, and the National Down Syndrome Congress.
The purpose of this site is to provide families with balanced and accurate information about a diagnosis of Down syndrome either during their pregnancy or at birth.
Down Syndrome Pregnancy
This site includes a blog and a public dialogue board to provide support for those who have received news during pregnancy or after birth that their baby has Down syndrome.
The Congratulations Project is an initiative in which members of the PALS family write letters to new members of the Down syndrome community. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new parents and siblings of a child with Down syndrome.
The National Down Syndrome Adoption Network (NDSAN) helps facilitate adoption of infants and children with Down syndrome. If you are finding out during the pregnancy that your baby has Down syndrome and you feel like placing the baby for adoption is something you may consider, this is the resource for you. In the past two years alone, this organization has helped facilitate over 100 adoptions of infants and children with Down syndrome.
Reference paper: Lindh, HL, Steele R, Page-Steiner J, Donnenfeld AE. 2007. Characteristics and perspectives of families waiting to adopt a child with Down syndrome. Genet Med. 9(4):235-40.
A Heartbreaking Choice
This website supports women who have made the “Heartbreaking Choice” to terminate a much wanted pregnancy due to a poor prenatal diagnosis, problems with their own health, or for the health of another fetus (selective reduction).
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