New initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey
Washington, DC, October 13, 2022— Today, the Rare Disease Diversity Coalition (RDDC), the nation’s leading voice for alleviating the disproportionate burden of rare diseases on communities of color, and the National Organization for Rare Disorders (NORD), the leading rare disease advocacy organization, announced plans to conduct a first-ever national survey of underrepresented rare disease patients and caregivers to better understand their unique perspectives and experiences in accessing and affording health care. The research was made possible through a grant from the Black Women’s Health Imperative.
“The Rare Disease Diversity Coalition is wholly committed to identifying evidenced-based solutions to alleviate the disproportionate burden of rare diseases on individuals, families, and communities of color, as well as other marginalized communities. We are eager to begin this important work to amplify their voice,” said Deanna Darlington, RDDC’s Interim Executive Director.
“NORD is grateful for the opportunity to continue to advance patient advocacy and access alongside the RDDC to make a lasting impact for individuals and families living with rare diseases,” said Peter Saltonstall, President and CEO, NORD. “The survey findings will elevate and empower the entire rare disease field to better understand and combat the significant health barriers rare disease patients and their caregivers face daily, as well as build a more equitable future for the over 25 million Americans currently living with a rare disease.”
The survey will help to inform future efforts by RDDC to bring rare disease experts, health and diversity advocates, and industry leaders together to identify solutions to overcome barriers faced by rare disease patients and their families and to help amplify diverse and marginalized perspectives in rare disease advocacy and research.
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. Earlier this year, NORD launched several dynamic resources to educate leaders, advocates, and nonprofit organizations on how a lack of DEI is affecting marginalized groups within the rare disease community.
About the Rare Disease Diversity Coalition (RDDC) – Launched in 2020 by The Black Women’s Health Imperative – RDDC is a partnership of the nation’s leading rare disease experts, patient and provider organizations, and health equity advocates working to address the extraordinary challenges faced by rare disease patients of color. Through research, advocacy, and collaboration, RDDC aims to advance evidence-based solutions to achieve greater equality within the rare disease community.
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 330 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 rarediseases.org.