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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.

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The Latest

stay up to date on our latest opportunities, events, reflections and reports.
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2025 Rare Disease Day RISE Awards

RDDC is gearing up for our annual Eve of Rare Disease Day RISE Awards. Save the date of February 27, 2025 to join us at Le Meridien Madison Hotel in Washington DC for our 2025 event. Registration will be available in January.
 
At the event, we will be presenting the 2nd annual RISE awards to a handful of rare disease health equity champions who have been Resilient, Impassioned, Strong, and Empowered towards the mission and vision of the RDDC. Congratulations to the recipients represented in our save the date! 

We can’t wait to see you there!

2024 RDDC ACHIEVEMENT REPORT

2024 RDDC Achievement Report

2024 marks the fourth anniversary of RDDC and our focus remains unwavering. We are dedicated to fostering equitable access to diagnosis and treatment for rare diseases, particularly among underrepresented populations. We significantly expanded our reach, now proudly partnering with over 90 member organizations dedicated to advancing equity in rare disease care. We are committed to amplifying their voices and addressing their unique needs, ensuring that they are not just heard, but truly understood.

RDDC remains steadfast in its commitment to identifying and championing evidencebased solutions that address the inequitable challenges faced by individuals seeking timely diagnosis, and information and create a brighter future for those affected by rare diseases.

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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

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