FOR IMMEDIATE RELEASE
NDSS Contact:
Michelle Sagan
301-728-0447
NDSS SUPPORTS PATIENT-CENTERED INITIATIVE FOR MORE EQUITABLE HEALTHCARE
Washington, DC (May 23, 2024) – The National Down Syndrome Society (NDSS) supported the Patients for Patient Safety US (PFPS US) “Patients Involved in deVeloping Outcomes Together initiative”, or “Project PIVOT,” which aims to make both research and clinical care more equitable for communities that have been historically discriminated against in healthcare. Rather than measuring the success of healthcare using traditional outcomes such as patient satisfaction and utilization, Project PIVOT will use measures based on the priorities of patients most affected by unsafe care, discrimination, and bias, including the disability community.
"Healthcare for the Down syndrome community is a top priority for our organization,” says NDSS President & CEO Kandi Pickard. “We are proud to work alongside PFPS US to prioritize patient voices and experiences when addressing healthcare equity.”
Project PIVOT is a patient-led initiative and received a $100,000 Eugene Washington Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). In addition to helping PFPS US obtain their initial grant, NDSS is participating on their project advisory board. To learn more about PFPS US and Project PIVOT, visit https://www.pfps.us/.
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About NDSS
Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more.