Building a Diverse, Equitable and Inclusive Rare Disease Community
Rare diseases do not discriminate. Their impact can be felt by people of all genders, ages, races, ethnicities, socioeconomic statuses, religions, and sexual orientations. That’s why we are working to fight for DEI as a community.
NORD partnered with the Rare Disease Diversity Coalition (RDDC), a project of the Black Women’s Health Imperative, to develop the first-ever national survey of underrepresented rare disease patients and caregivers, to better understand your unique perspectives and experiences in accessing and affording health care. The report on these survey findings was published in August, 2024 and is available to read here.
Resources to Help You
We have developed resources to educate leaders, advocates, and nonprofit organizations about how marginalized groups within the rare disease community are affected by a lack of DEI. It is our belief that small steps can build into important and essential change, and these resources are the tools to help on that journey.
DEI Toolkits
These easy-to-use toolkits in both English and Spanish contain background information, worksheets, a glossary of terms, and more.
- Part 1: Navigating DEI in Rare Disease Nonprofits
- Part 2: Membership Inclusivity: Who’s Left Out? Recognizing Barriers and Building an Inclusive Community
- Part 3: Board Diversity: Growing Your Board of Directors to Reflect Your Diverse Community
Click here to download NORD’s Diversity, Equity & Inclusion toolkits.
DEI Organizational Readiness Quiz
The Rare Disease Diversity Coalition (RDDC) has developed a short, anonymous Organizational Readiness Quiz to help rare disease organizations assess whether they are prepared to meet the needs of diverse populations.
Find out if your organization is «DEI Ready» by taking the quiz here.
DEI Webinars
Tune in to our series of 3 webinars that complement our three toolkits
- 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
- 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
- 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
Click here to view NORD’s Diversity, Equity & Inclusion webinars.