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A U.S. Survey Will Capture Diverse Perspectives in Rare Disease

NORD and the Rare Disease Diversity Coalition form a partnership to shed light on access for underrepresented patients.

illustration featuring many people of different races and ethnicities

Millions of people around the globe live with a rare disease and many will struggle to get an accurate diagnosis, gain access to treatment and find a health care team to manage their ongoing care.

For rare disease patients in marginalized communities, the obstacles can be especially steep. But not enough is known about their experiences because diverse patients are seldomly represented in rare disease research.

That’s why the Rare Disease Diversity Coalition (RDDC) and the National Organization for Rare Disorders (NORD) just launched a joint survey of U.S. patients. The results will help inform future decisions designed to help patients and their caregivers, organizers said. A grant from the Black Women’s Health Imperative is funding the research.

“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,” Deanna Darlington, RDDC’s Interim Executive Director, said in an announcement.

President and CEO of NORD Peter Saltonstall said the survey will help identify barriers and build a more equitable future.

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,” he said.

In addition to this survey, NORD launched a series of resources earlier this year to promote diversity, equity and inclusion practices and expand who is being served.

Learn more about the NORD-RDDC partnership and survey.