Everyone deserves accurate, up-to-date information, support, and connections when navigating a new diagnosis. In 2022, we co-founded the Down Syndrome Collaborative to best serve new and expectant parents from pregnancy through age 3 with key partners in the Down syndrome community.

Key Partners:

Lettercase National Center for Prenatal and Postnatal Resources

As the nation’s clearinghouse & comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions, Lettercase leads the effort to make sure all expectant parent and providers have the resources and support they need at the moment of diagnosis. All resources are reviewed by representatives of the national medical, genetics, and advocacy organizations.

Down Syndrome Diagnosis Network

DSDN offers online groups for parents to connect with other parents at similar stages of the diagnosis journey.  Our trained support team hosts private, moderated groups for new and expectant parents, as well as topical subgroups. Whether seeking out local or online connections, DSDN is ready to meet them where they are and provide the resources parents need from pre-decision and beyond.

National First Call Center

The National Parents First Call Program is a volunteer group of trained parent mentors–with oversight from a genetic counselor–who are available 24/7 to listen, share, answer questions, and provide valuable information.  

National Down Syndrome Adoption Network

The NDSAN provides counseling to families in deep grief and considering adoption. They also provide Down syndrome education and Down syndrome parent counseling, and connect families to their local Down syndrome support groups. If families choose adoption, the NDSAN connects them with families who want to adopt a child with Down syndrome.

Local Down Syndrome Organizations

While online connections can be important, they are only one layer of support a parent may look for as they raise a child with Down syndrome.  Around the world, there are organizations focused on providing in person support, resources and connections for people with Down syndrome. Not sure how to connect? DSDN can help you find the local support you need.