Wellness That Matters: Black Health News & Community Care
WASHINGTON, D.C. โ The Rare Disease Diversity Coalition (RDDC) is proud to commemorate its 5th anniversaryโmarking five years of bold, community-driven work to transform how rare diseases are diagnosed, treated, and understood for historically underserved populations.
Launched as a call to action, RDDC has grown into a national coalition of over 100 partner organizations, united in its mission to eliminate disparities in rare disease care. From advancing research and policy to amplifying the voices of patients and caregivers, the Coalition continues to push for a healthcare system that works for everyone.
At a recent Capitol Hill briefing, RDDC leaders and community advocates gathered to spotlight the human stories behind the statisticsโstories that underscore both the urgency and the opportunity for change.
Among them was WNBA Champion and rare disease advocate Diamond DeShields, who shared her journey living with keratoconus, a degenerative eye disease that silently impacted her athletic career for years before being diagnosed.
โIโd seen so many doctors up until this point,โ DeShields recalled. โAnd I lost faith that I was gonna find a real solution.โ
Her long-term relief came only after reaching the highest levels of professional sportโhighlighting the devastating consequences of delayed detection.
โDiamond wasnโt held back by work ethic or skill,โ noted Dr. Rutvi Doshi, the team physician who ultimately helped her condition. โShe was held back by a system that didnโt see her condition early enough. This is what happens when awareness doesnโt meet access.โ
Other speakers shared equally powerful testimonies. Sarah Jones, living with EGPA, described the emotional, physical, and financial burden of visiting over 57 doctors in one year before receiving an accurate diagnosis. Oya Gilbert, a multiple myeloma patient, shared that it was a routine life insurance examโnot his healthcare providerโthat uncovered his condition.
โThese are not outliers. These are patterns,โ said Jennifer Waldrop, Executive Director of RDDC. โOur systems are failing too many people, too oftenโand RDDC exists to change that.โ
RDDCโs groundbreaking report on inequities in rare disease care remains a cornerstone of its strategyโoffering a data-driven roadmap for transforming care delivery, research inclusion, and public awareness.
Over the past five years, RDDC has:
- Elevated community and patient voices through national campaignsย
- Partnered with researchers and policymakers to reshape systemsย
- Built a diverse coalition of stakeholders working together for changeย
- Created tools and resources to empower advocacy at every levelย
Looking ahead, RDDC remains committed to a simple but profound mission: ensuring that no one is overlooked, dismissed, or delayed when facing a rare disease.
โWe are fighting for a future where patients are believed the first time. Where diagnosis comes sooner. Where no one is left behind,โ Waldrop said.
For more on RDDCโs fifth anniversary and its work to drive health equity in rare disease care, visit www.rarediseasediversity.org.
Media Contact: teambwhi@skaibluemedia.comย
About the Rare Disease Diversity Coalition (RDDC):
Black Womenโs Health Imperative launched the RDDC to address the extraordinary challenges faced by underserved populations with rare diseases. The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on historically marginalized populations. For more information, visit rarediseasediversity.org.
About the Black Womenโs Health Imperative (BWHI)
BWHI is a national non-profit organization dedicated to identifying the most pressing health issues that affect the nationโs 22 million Black women and girls and invests in the best strategies and organizations to accomplish its goals. You can find more information about BWHI at bwhi.org.
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