Survey to ID Barriers Facing Minorities With Rare Diseases

RDDC and NORD to ask patients, caregivers about care access, affordability

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by Mary Chapman |

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An upcoming U.S. survey, reported to be the first of its kind, aims for a better understanding of barriers to healthcare access and affordability among rare disease patients and caregivers in racial minority or other marginalized groups, and to help inform ways to remove them.

The initiative is led by the Rare Disease Diversity Coalition (RDDC), which works to alleviate the disproportionate burden of rare diseases, such as aromatic l-amino acid decarboxylase (AADC) deficiency, on communities of color, and the National Organization for Rare Disorders (NORD), a rare disease advocacy organization with more than 330 disease-specific member groups.

A grant from the Black Women’s Health Imperative, which works to achieve health equity for African American women in the United States, is funding the survey. The Health Imperative established the RDDC in 2020.

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“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,” said Deanna Darlington, RDDC’s interim executive director, in a press release. “We are eager to begin this important work to amplify their voice.”

The patient and caregiver survey of patients is expected to help the RDDC with future efforts to bring together rare disease experts, industry leaders, and health and diversity advocates to find solutions to healthcare gaps — from diagnosis to treatment — encountered by rare disease patients and their families.

It also is expected to help give greater weight to perspectives from those in diverse and marginalized communities regarding rare disease advocacy and research.

“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, NORD’s president and CEO.

“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,” Saltonstall added.

Earlier this year, NORD introduced new resources to help advocates, leaders, and nonprofit organizations understand how the dearth of diversity, equity, and inclusion (DEI) policies and programs affects marginalized groups in the rare disease community. The resources also offer strategies for implementing DEI efforts.