To Top

Mar. 3, 2022

TOPIC: Press Releases

Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

Posted by Rohan Narayanan

NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community 

Washington, DC, March 3, 2022— Today, the National Organization for Rare Disorders (NORD), the leading rare disease advocacy organization, released a dynamic new resource to educate healthcare nonprofit and advocacy leaders on how a lack of diversity, equity, and inclusion (DEI) is affecting marginalized groups in the rare disease community. This expansive resource – the first in a series of three toolkits – offers tools and strategies for implementing DEI within rare disease nonprofit organizations to help address current barriers and expand the communities being served 

NORD has long advocated for adequate, accessible, equitable and affordable healthcare coverage, especially considering the rare disease community includes a number of marginalized patient communities. Social determinants of health – including income, education, and even one’s own zip code – create significant barriers that lead to delays in diagnosis, difficulty accessing treatments, and increased mortality rates,” said Peter Saltonstall, President and CEO of NORD. “NORD’s vision is to help build a more equitable future in which all of the more than 25 million Americans living with a rare disease have access to the care they need to survive and thrive.”

NORD brings together rare disease patients, caregivers, leaders, researchers, clinicians, regulators, advocates, and industry to better understand and fight for diversity, equity and inclusion within the rare disease community.  

The “Part One: Navigating DEI in Rare Disease Nonprofits,” toolkit is based on NORD’s 2021 DEI Webinar Series for Rare Disease Nonprofits, a three-part series focused on the foundation of diversity, equity, and inclusion, their applicability to the rare disease community, and how rare disease nonprofits can increase engagement with marginalized communities 

View or download the full toolkit. 


About the National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit