Facing a diagnosis?

People with Down syndrome and their families are best placed to provide parents with a diagnosis with support, accurate information and knowledge based in direct lived experience.

If you are considering screening, or face a diagnosis, we would love to hear from you. Please contact one of our regional representatives.

Parents who are receiving prenatal health care have entered into a relationship of trust with a midwife or other medical professional for nurturance and support of their wanted pregnancy. We believe that nurturance, health care and support should remain the focus if there is an unexpected diagnosis. When faced with a diagnosis, this is the first moment we are called to be true parents and provide unconditional love and support to our children. We believe that the inherent dignity and value of that wanted child does not change as a result of a diagnosis. We are here to provide compassion, love and support in these situations.

A message to future mums by our international coalition led by CoorDown in Italy.

The following websites provide excellent information and support around the reality of life with Down Syndrome.

Down Syndrome Diagnosis Network

We are women from all over the United States who each have a child with Trisomy 21 (Down syndrome) and a great desire to ensure women who receive a DS diagnosis are provided with current information and support.
Visit their website

Down Syndrome Pregnancy
Down Syndrome Pregnancy is a program administered by the Human Development Institute at the University of Kentucky to provide honest, compassionate, and informative support for those in post-diagnosis pregnancy or waiting until birth for a confirmed diagnosis.
Visit their website

Further information and advocacy

These articles and organisations provide information about living with Down syndrome.