Webinar: Rare but Not Invisible: Lifting Up Marginalized Voices in Rare Disease
AcademyHealth invites you to a timely presentation highlighting key findings from the RDDC-NORD Inequities in the Rare Disease Community Report.
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Overview
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 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. 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 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 systems.
By the end of the webinar, participants will:
- Gain a deeper understanding of the systemic inequities impacting rare patients and caregivers.
- Learn about evidence-based insights and community-led recommendations.
- Explore actionable strategies to apply a health equity lens to rare disease research, practice, and community implementation.
Featured Speakers
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Syreen Goulmamine, M.P.H.
Syreen Goulmamine, MPH, is a seasoned scientist and public health expert dedicated to bridging research, policy, and practice to advance health outcomes. Read Bio
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Nate Milam II
Nate Milam II (he/him) is a rare disease advocate and digital creative dedicated to advancing health equity and representation for historically marginalized communities. Read Bio
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Jocelyn Cooper
Jocelyn Cooper is the Program Manager for the Rare Disease Diversity Coalition (RDDC) at the Black Women’s Health Imperative (BWHI). Read Bio
Earlier this year, the AcademyHealth Health Equity and Women and Gender Interest Groups launched a new webinar series aimed at advancing inclusive and impactful health research. Designed to spotlight pressing issues, amplify diverse voices, and drive innovation in research and practice, the series shares timely studies, effective strategies for community-engaged work, and highlights a range of career pathways in the field.
Attendees can expect engaging speakers from varied backgrounds, relevant topics, and actionable insights to strengthen their work and build essential skills for driving meaningful change in health research and policy.