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 has partnered with the Rare Disease Diversity Coalition (RDDC) and 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. We will release a report of findings in early 2024.

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 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.