Rare Disease Diversity Coalition

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.

Rare Disease Diversity Coalition

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.

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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.

Our Focus

Diversity in Research & Clinical Trials Working Group

Diversity in Research & Clinical Trials

Provider Education & Engagement Working Group

Patient & Caregiver Working Group

Delays in Diagnosis Working Group

Government Regulation, Legislation & Policy Working Group

Research & Resources

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