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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.
NMQF-Leadership-Summit

NMQF Leadership Summit

April 28-29, 2025

RDDC is proud to partner with the National Minority Quality Forum (NMQF) for the Annual NMQF Leadership Summit on Health Disparities & Spring Health Braintrust, taking place April 28-29, 2025 in Washington, DC. The Summit on Health Disparities is a premier event dedicated to advancing healthcare equity, bringing together nearly 1,000 leaders annually, including healthcare providers, researchers, policymakers, community advocates, and faith-based organizations. The summit has played a critical role in educating and mobilizing thousands of health leaders in the fight against disparities. On April 29th from 10am to 3pm ET, RDDC will be leading a 4-panel series focused on rare diseases.

If you are a patient, caregiver, patient advocate, and/or work for a patient advocacy organization please use this patient advocacy registration code:
Rddc-NMQF-25

Register Today
Rare Disease Diversity Coalition (RDDC) Hill Briefing:

Rare Disease Diversity Coalition (RDDC) Hill Briefing:

"Addressing Health Disparities in Rare Disease: A Call to Action”

April 30, 2025

This briefing will bring together key stakeholders to address the health disparities in the rare disease community, with a focus on the barriers faced by marginalized groups. The event will feature presentations on RDDC’s patient and caregiver survey findings, insights from the NIH on rare disease data, and patient perspectives on navigating the challenges of diagnosis and 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.

Download The PDF
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.

Download The Report
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”.

Take The Quiz
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

Volunteer

Volunteer

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Become A Partner

Become a Partner

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Support Us

Support Us

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