( ENSPIRE Community Spotlight ) A National Survey For Future DEI Representation
ENSPIRE Contributor: Gabrielle Maya
According to PRNewswire on October 13th, it was announced in Washington that the Rare Disease Diversity Coalition (RDDC) and National Organization for Rare Disorders, will partner up to create the first-ever national survey for rare disease patients and caregivers. Those who are underrepresented, people of color, and other marginalized groups, need proper health care. These two big organizations are trying to identify and fix the disproportion burden. This partnership shows an initiative to identify gaps experienced by patients and caregivers in the community, to understand rare disease diagnoses, and the proper treatment journey.
The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition in 2020. Their goal is to partner with the nation’s leading rare disease experts, patient and provider organizations, and health equality advocates to help address the challenges many rare disease patients of color face. They strive to create equality within the rare disease community using evidentiary support.
The National Organization for Rare Disorders is an independent advocacy organization that represents all patients and families who are affected by rare diseases in the United States.
They are a voice for the rare disease community and strive to implement supportive policies, and education, advance medical research and provide services. Together with over 330 disease-specific member organizations, 17,000 rare Action Network advocates, and national/global partners.
NORD brings rare disease patients, caregivers, leaders, researchers, clinicians, and advocates to help understand and fight for diversity equity, and inclusion (DEI) in the rare disease community.
Both organizations are creating a survey. This will help understand several unique perspectives and experiences, and access the information to determine the right affordable health care. The Black Women’s Health Imperative Grant made this research possible.
“The Rare Disease Diversity Coalition is wholly committed to identifying evidence-based solutions to ease 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. 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,” said Peter Saltonstall, President, and CEO, NORD.
The survey will help bring in rare disease experts, health and diversity advocates, and industry leaders. To help do more thorough research.
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