Wellness That Matters: Black Health News & Community Care
- Diamond DeShields described delayed diagnosis of keratoconus, revealing how detection failures harmed her athletic career.
- RDDC Capitol Hill briefing amplified patient stories, spotlighting urgency and opportunity to reform rare disease care.
- Stories like Sarah Jones (living with EGPA) and Oya Gilbert (living with multiple myeloma) reveal diagnostic and financial burdens.
- RDDC's groundbreaking report provides a data-driven roadmap to address inequities in care delivery, research inclusion, and public awareness.
- RDDC builds partnerships and advocacy tools to empower communities, ensuring patients are believed and diagnosed sooner.
WASHINGTON, D.C. — The Rare Disease Diversity Coalition (RDDC) is proud to commemorate its 5th anniversary—marking 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 statistics—stories 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.
“I’d seen so many doctors up until this point,” DeShields recalled. “And I lost faith that I was gonna find a real solution.”
Her long-term relief came only after reaching the highest levels of professional sport—highlighting the devastating consequences of delayed detection.
“Diamond wasn’t held back by work ethic or skill,” noted Dr. Rutvi Doshi, the team physician who ultimately helped her condition. “She was held back by a system that didn’t see her condition early enough. This is what happens when awareness doesn’t meet access.”
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 exam—not his healthcare provider—that uncovered his condition.
“These are not outliers. These are patterns,” said Jennifer Waldrop, Executive Director of RDDC. “Our systems are failing too many people, too often—and RDDC exists to change that.”
RDDC’s groundbreaking report on inequities in rare disease care remains a cornerstone of its strategy—offering 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 campaigns
- Partnered with researchers and policymakers to reshape systems
- Built a diverse coalition of stakeholders working together for change
- Created tools and resources to empower advocacy at every level
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.
“We are fighting for a future where patients are believed the first time. Where diagnosis comes sooner. Where no one is left behind,” Waldrop said.
For more on RDDC’s fifth anniversary and its work to drive health equity in rare disease care, visit www.rarediseasediversity.org.
Media Contact: teambwhi@skaibluemedia.com
About the Rare Disease Diversity Coalition (RDDC):
Black Women’s 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 Women’s Health Imperative (BWHI)
BWHI is a national non-profit organization dedicated to identifying the most pressing health issues that affect the nation’s 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.
Read the full article on the original site
