RDDCTM convenes rare disease experts, patient organizations, health and diversity advocates, and industry leaders with a deep knowledge of the medical, industry, regulatory, and cultural challenges facing people of color with rare diseases.
This year marks the 5th anniversary of the Rare Disease Diversity Coalition, a milestone in our ongoing fight to ensure that patients from underserved communities are seen, heard, and prioritized. At our recent Capitol Hill briefing, WNBA Champion Diamond DeShields shared how Dr. Rutvi Doshi’s care gave her a new lease on life after years of uncertainty with her eye disease, keratoconus. Stories like hers continue to drive the Rare Disease Diversity Coalition’s mission. As we celebrate five years of action, partnerships, and progress, this new infographic highlights our journey to ensure no one is left behind in rare disease care.
The Rare Disease Diversity CoalitionTM (RDDCTM) advocates for solutions to address the inequities that diverse and vulnerable communities face with respect to rare disease. On February 28th, Rare Disease Day, we join the globally-coordinated movement on rare diseases, to work towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The key message for Rare Disease Day 2025 is #RiseForRare in support of RDDC and #ShareYourColours in honor of the global movement.
The purpose of the Rare Disease Day Toolkit is to provide members with educational and engagement tools and resources which can be shared across owned platforms and networks.
The Rare Disease Diversity CoalitionTM (RDDCTM) and the National Organization for Rare Disorders (NORD) partnered on a groundbreaking national survey aimed at illuminating the barriers faced by underrepresented patients with rare diseases. This pioneering research involved over 2,800 participants, revealing critical insights into the challenges of accessing necessary healthcare.
Meeting the needs of diverse populations is critical to serving the rare disease community. The Rare Disease Diversity Coalition (RDDC) is here to help you and your organization implement diversity, equity, and inclusion strategies and tactics to ensure that you are serving all patients, caregivers, and communities. Diversity extends beyond race and ethnicity to include age, gender, geographic location, sexual orientation, disability, etc.
Take the short anonymous quiz below to find out if your organization is “DEI Ready”.
RDDC believes firmly in collaboration and leveraging the input of stakeholders, including rare disease patients and families, who experience daily the struggles of these issues; patient organizations, who represent and unite those most affected; clinicians and researchers, who drive understanding and evidence across the medical community; private-sector groups, which play a crucial role in supporting research; and policymakers, who drive changes in government policy that lead to progress. To tap into the collective expertise and experiences of various stakeholders, RDDC convened their Patient and Caregiver workgroup in 2022 to identify missing data specific to the patient journey that would gain insights into the unique perspectives and challenges faced by patients and caregivers from historically underrepresented populations, impacted by rare diseases for those concerned by accessing and affording healthcare.
The Rare Disease Diversity CoalitionTM (RDDCTM) formed under the leadership of the Black Women’s Health Imperative (BWHI) to help address the extraordinary challenges faced by rare disease patients of color. As advocates for patients who deal with dual struggles—to be included in the promise of scientific advancements that improve health outcomes and not be left behind because of their rare condition or their race—the leaders of RDDCTM envision a unique opportunity to contribute to progress for both the rare disease and health disparities movements. This paper will describe the journey that RDDCTM is taking to contribute to real and significant progress.
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