Rare Disease Diversity Coalition

More than 30 million Americans— nearly 1 in 10—have a rare disease. For rare disease patients from historically marginalized populations, systemic inequities have caused a crisis.

We envision a world with health equity in rare disease patient communities.

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The Latest

Stay up to date on our latest opportunities, events, reflections and reports.

The 2025 Policy Report Cover: Click to view the report

RDDC 2025 Policy Report

The 2025 RDDC Annual Policy Report highlights a year of major federal healthcare shifts driven by new Administration leadership, extensive agency restructuring, and sweeping congressional action. Key developments include accelerated FDA pathways for rare disease therapies, evolving guidance for cell and gene treatments, and Medicare and Medicaid reforms under the One Big Beautiful Bill Act that may significantly impact coverage, access, and research stability for rare disease communities. Against a backdrop of workforce reductions, drug pricing reforms, and the rollback of equity-focused initiatives, the report underscores both emerging risks and opportunities for rare disease patients. It also spotlights RDDC’s continued advocacy in advancing health equity, elevating underserved voices, and engaging policymakers to protect innovation, early diagnosis, and access to care heading into 2026.

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Understanding Health Inequities in Myasthenia Gravis Through the Patient–Caregiver Lens

Developed by the Rare Disease Diversity Coalition (RDDC) in collaboration with the Myasthenia Gravis Foundation of America (MGFA), this community-informed report explores how social determinants of health shape the experiences of people living with Myasthenia Gravis and those who support and care for them. Drawing directly from lived experience and patient-caregiver insights, the report highlights barriers to diagnosis, care, treatment access, and overall well-being across the MG community. Explore the report and accompanying social media toolkit to help raise awareness, amplify patient and caregiver voices, and support action toward more equitable MG care.

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2025 RDDC Achievement Report

In 2025, RDDC proudly celebrates five years of advancing equity in rare disease care. Our mission remains clear: to ensure that underrepresented communities have fair access to timely diagnosis, quality treatment, and support. This year, our coalition has grown to include over 90 partner organizations, each playing a vital role in driving change and shaping a more inclusive rare disease landscape.

We continue to champion evidence-based solutions that tackle long-standing disparities and uplift the voices of those too often overlooked. RDDC is deeply committed to building a future where every individual affected by a rare disease is seen, heard, and supported.

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Our Mission

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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