More than 30 million Americans— nearly 1 in 10—have a rare disease. For rare disease patients of color, racial disparities have caused a crisis.
We envision a world without health disparities in rare disease patient communities.
More than 30 million Americans— nearly 1 in 10—have a rare disease. For rare disease patients of color, racial disparities have caused a crisis.
We envision a world without health disparities in rare disease patient communities.
The Rare Disease Diversity Coalition (RDDC) is launching its Rare Disease Fellowship to inspire the next generation of medical professionals to work in the rare disease space, particularly addressing health disparities among people of color with rare diseases. The Fellowship, spanning from September 2024 to February 2025, involves matching fellows with rare disease organizations. It is open to undergraduates, medical students, early-career physicians, nurses, and researchers interested in rare disease disparities among communities of color.
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.
Rare Disease Diversity Coalition is dedicated to addressing the extraordinary challenges faced by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH).
The Coalition brings together rare disease experts, patients, health care professionals, diversity advocates, and industry leaders to bring about evidence-based solutions that alleviate the disproportionate burden of rare diseases on marginalized populations.
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