Between 2022-2023, we held community conversations with patient advocacy leaders and Black and Hispanic parents of children with DS to get their input on helpful practices for medical providers and advocacy organizations to use when supporting new and expectant parents and sharing research-based information. Then, we shared the parent recommendations with health equity experts and medical providers to identify strategies, platforms, and formats to share research with Black and Hispanic new and expectant parents of children with DS.

Below is a summary of strategies identified by parents and interdisciplinary experts so that medical and advocacy organizations can improve their support for Black and Hispanic new and expectant parents of children with DS.

Read a summary about the project: Patient Centered Outcomes Research Project

“These White Papers were funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EADI-24186). The statements presented in these white papers are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee