On April 28–29, 2025, nearly 1,000 leaders gathered at the Conrad Hotel in Washington, DC, for the annual National Minority Quality Forum (NMQF) Leadership Summit on Health Disparities & Spring Health Braintrust. This year, on April 29th, the Rare Disease Diversity Coalition (RDDC)—an initiative of the Black Women’s Health Imperative—led an impactful Rare Disease Track that placed underserved communities at the center of critical conversations about health equity.
We’re thrilled to share that Links2Equity proudly participated as attendees and partners of the RDDC and were honored to contribute to this premier gathering of healthcare leaders, healthcare providers, researchers, community advocates, patients, and changemakers committed to advancing health equity for underserved communities.
Themed “Driving Inclusion, Advocacy, Policy, and Community Power in Rare Disease,” this summit spotlighted the urgent need to close gaps in care, research, and policy that have long sidelined historically underrepresented populations. The Rare Disease Track featured four dynamic panels that played a critical role in educating and mobilizing thousands of health leaders in the fight against disparities.
A highlight of the summit, featured the impactful session, “Power of Community: Engaging Gatekeepers for Rare Disease Advocacy.” Links2Equity’s founder, Deanna Darlington, played a pivotal role behind the scenes in shaping the summit’s rare disease track sessions and took the stage as moderator for this powerful discussion. The panel spotlighted grassroots leadership and the critical importance of trust-building and partnerships in advancing care and awareness for underserved communities.
This panel featured inspiring voices, including:
- Oya Gilbert, Founder & CEO, Health, Hope & Hip-Hop Foundation
- George Kerr, III, Elder, Westminster Presbyterian Church DC
- Robert Long, Executive Director, Uplifting Athletes
- Tiffany Scott, Co-Founder & President, Maryland Community Health Workers Association
- Stephen Thomas, Professor and Director, University of Maryland’s Center for Health Equity
Here’s what stood out from the four panels:
👉 Equity in Clinical Trials: Panelists shared strategies to make trials more inclusive—from community-based recruitment and decentralized trial models to overcoming barriers like transportation and mistrust. The message was clear: building trust starts with showing up early and often.
👉 Power of Advocacy: Patient advocacy groups are transforming healthcare access and outcomes. Through creative outreach—podcasts, documentaries, HBCU partnerships, and even blood pressure screenings in retail stores—advocates are breaking barriers and ensuring more voices are heard.
👉 Shaping Policy for Impact: Policy leaders emphasized that advocacy must happen at every level—local, state, and federal. By educating healthcare providers and pushing for patient-centered policies, we can ensure rare disease communities have equitable access to care, diagnosis, and treatment.
👉 Community-Centered Engagement: The final panel showcased grassroots innovations, from barbershop-based health programs that included faith-based leaders, community health workers, sports icons, to hip-hop-infused health education. The takeaway? Sustainable change is built on trust, cultural pride, and authentic community partnerships.
The summit was anchored by powerful remarks from Gary A. Puckrein, PhD (President & CEO, NMQF) and Jenifer Waldrop, MS (Executive Director, RDDC), who challenged us all to work collectively for a more just and equitable healthcare system. Besides attending and participating in the four panels, we were truly inspired by the incredible Awards Dinner—a highlight of the summit celebrating outstanding leaders and champions in health equity.
RDDC remains committed to driving inclusion, advocacy, and policy change for diverse rare disease communities that includes, gender, race/ethnicity, geography, sexual orientation, and age. Want to learn more? Visit RDDC’s website and visit the RDDC x NMQF Leadership Summit Program for full details on the summit panels and their ongoing initiatives.
Interested in Links2Equity’s detailed summit summary? Reach out to us at info@Links2Equity.com.
We extend our gratitude to RDDC and NMQF for convening such a transformative event, and to our fellow panelists for their invaluable insights. At Links2Equity, we remain steadfast in our mission to bridge gaps in care and amplify community voices in the rare disease space.
Together, we are building a future where every voice matters, and no one is left behind.
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