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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 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.
Our 5-Year Journey

Celebrating 5 Years of Standing Up for Rare Disease Patients

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.

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People Living with PNH

Health Equity for People Living with PNH

Creating a Leveled Playing Field

The Rare Disease Diversity Coalition and Links2Equity are proud to present this paper, Health Equity for People Living with PNH: Creating a Leveled Playing Field. This paper was made possible through the insights and contributions of patient advocates, healthcare professionals, advocates, and others who have lived experience with Paroxysmal Nocturnal Hemoglobinuria (PNH). Please share with your PNH communities.

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2025 RDDC ACHIEVEMENT REPORT

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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Inequities in the Rare Disease Community 2024 Report

Inequities in the Rare Disease Community 2024 Report

The Voices of Diverse Patients and Caregivers

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.

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Take the BQHI DEI Quiz

Diversity, Equity, and Inclusion (DEI) Organizational Readiness Quiz

Are you DEI ready?

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”.

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Our Mission Ribbon

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

Patient, Provider, and Caregiver Journey

Patient, Provider, and Caregiver Journey

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Diversity in Research & Clinical Trials Working Group

Diversity in Research & Clinical Trials

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Government Regulation

Government Regulation, Legislation & Policy

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Get Involved

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Volunteer

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Become A Partner

Become a Partner

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Support Us

Support Us

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