AcademyHealth invites you to a timely presentation highlighting key findings from the RDDC-NORD Inequities in the Rare Disease Community Report. Rare Disease Diversity Coalition (RDDC) Program Manager Jocelyn Cooper will explore in this session how inequities such as bias, delays in diagnosis, limited access to care, and more impact the lives of historically marginalized communities. RDDC will share how their organization has worked to center community voices and patient experiences to identify critical gaps in trust, representation, and data. In addition, community partner Nate Milam II, Founder and CEO of Stripes of Solidarity (SOS), will share how he brings together patients to amplify underrepresented voices through education, policy, and creative storytelling.
Drawing on insights from the RDDC-NORD’s report and SOS’s engagement with patients, the session will spotlight persistent challenges and provide recommendations for solutions. This session will be especially valuable for public health professionals, providers, researchers, and leaders seeking to advance more inclusive and equitable health system