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Building a Diverse, Equitable and Inclusive Rare Disease Community

NORD’s vision is to help build a more equitable future for the over 25 million Americans living with a rare disease. Rare diseases do not discriminate – their impact can be felt by people of all genders, ages, races, ethnicities, socioeconomic statuses, religions, and sexual orientations. And so, NORD works together with rare disease patients, caregivers, leaders, researchers, clinicians, regulators, advocates, and industry to fight for diversity, equity and inclusion (DEI) within the rare disease community. DEI work can take on a variety of forms, and individuals and organizations can start small and build upon important changes over time.

NORD is proud to present a dynamic new resource to educate leaders, advocates and healthcare nonprofit organizations on how a lack of DEI is affecting marginalized groups within the rare disease community. “Navigating DEI in Rare Disease Nonprofits” is the first toolkit in a series of three and it offers strategies for implementing DEI within a rare disease nonprofit, addressing current barriers for marginalized communities, and expanding who is being served.

Learn more and grow alongside the rare disease community!

Diversity, Equity and Inclusion Toolkits

Please submit the form below to access NORD's Diversity, Equity and Inclusion resources.


Diversity, Equity and Inclusion Webinars

Part 1: Navigating Diversity, Equity, and Inclusion in Rare Disease Non-Profits

Dr. Keri Norris, VP of Health Equity, Diversity, and Inclusion at the National Hemophilia Foundation discusses how systemic barriers and social determinants of health can impact a person’s health
Speaker: Keri Norris, PhD, MPH, MCHES

Watch the full video

Part 2: Who’s Left Out? Recognizing Barriers and Building an Inclusive Community

Ashley Ferreira, formerly with the Immune Deficiency Foundation,
shares her strategies for building authentic engagement with marginalized communities
Speaker: Ashley Ferreira, MPA

Watch the full video

Part 3: Ensuring Your Board Reflects Your Diverse Community

Dr. Yolanda Avent, CEO of Avent Diversity Consulting, makes the case for incorporating best practices for diversifying your board of directors.
Speaker: Yolanda Avent, PhD

Watch the full video

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