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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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.

Get Started Now

The Latest

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

The RDDC^TM Health Equity Conference Scholarship

Scholarships will support those with limited resources who are not able to attend conferences without assistance. These scholarships are intended to expose students and early career providers of color to rare disease and health equity learning opportunities in hopes that they will pursue or further their career in providing healthcare to patients of the Rare community.

This scholarship is available to early career healthcare professionals (0-5 yrs. experience), medical students, and allied health students. The deadline to submit an application is August 30, 2023.

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Rare Health Equity Forum

The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways in which we can better serve marginalized populations within the rare disease community. In its third year, the event will be focused on the theme of “Equity In Action”.

Over the past two years we have worked as a community to learn about, and discuss the biases, barriers and challenges that marginalized communities face within rare disease. We have recognized the need to work together to bring forward more meaningful approaches to tackling these challenges. This year, sessions will provide attendees with actionable tools and strategic insights to support underserved and/or underrepresented patients within their community.

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A Week In RARE Media Kit

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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Our Focus

Diversity in Research & Clinical Trials

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Provider Education & Engagement Working Group

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Patient & Caregiver Working Group

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Delays in Diagnosis Working Group

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Government Regulation, Legislation & Policy Working Group

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Research & Resources

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Rare Disease Diversity Coalition

Rare Disease Diversity Coalition

The Latest