The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color.
These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions.
The five RDDC groups are:
- Delays in diagnosis and treatment working group
- Research and clinical trials working group
- Provider education and engagement working group
- Patient and caregiver working group
- Government regulation, legislation, and policy working group
According to the RDDC, people of color with rare diseases face disproportionate challenges in accessing quality care, and are underrepresented in research and clinical trials.
The Black Women’s Health Imperative — a national, nonprofit organization focused on advancing health equity and social justice for Black women — launched the RDDC in 2020 to advocate for evidence-based solutions to racial and ethnic disparities in rare disease communities.
“We started the Rare Disease Diversity Coalition to unite healthcare leaders, professionals, organizations and advocates to help rare disease patients of color overcome the many inequities they encounter on their journey from symptoms to quality treatment,” Linda Goler Blount, president and CEO of Black Women’s Health Imperative and an RDDC steering committee member, said in a press release.
“Awarding the first Working Group Grants less than one year after our inception showcases our commitment to making a difference,” Blount added.
Rare disease experts, diversity advocates, and industry leaders make up the working groups, which are “dedicated to the development and implementation of strategies that reduce disparities in the rare disease community, improve the quality and accessibility of care, and advance health equity in a time of rapid transformation,” the RDDC stated in its release.
The working groups were recently invited to submit proposals for projects likely to have tangible results within the next five to 12 months.
Solution grants will support a variety of these projects, including the creation of a family health history pilot to raise awareness on its importance for people of color. The pilot project is expected to be the basis of a later nationwide effort.
Other projects are dedicated to the development of patient education materials about genetic testing and the exchange of genetic testing resources; the development of clinical trial videos for patients as educational tools, and other resources to encourage greater participation; and research into the composition of patient groups in rare disease clinical trials, in order to increase patient diversity in research.
These grants will also fund the creation of a principal investigator/study coordinator pipeline program to encourage greater minority group participation in research, and an audit to better understand the needs of diverse rare disease patients and their caregivers in communicating with health experts, and in patient engagement and healthcare access.
Other funded projects include the creation of an industry guide on creating inclusive and culturally sensitive patient materials, and materials for cultural sensitivity, awareness, and bias training for healthcare providers with continuing medical education accreditation.
Regarding education, the solution grants will support a project on a medical student webinar series to heighten awareness of rare diseases in communities of color, the production of a medical school pipeline initiative to build trust and engagement with healthcare professionals, and the creation of a rare disease fellowship program to collaborate with RDDC member organizations for graduate students in the health sciences.
Finally, the grants will support an advocacy policy proposal, building congressional support, and developing advocacy opportunities for RDDC members and patients. The policy working group will track and respond to executive branch regulatory proposals that are relevant to diversity in rare diseases.
It is estimated that more than 30 million people in America have a rare disease. The RDDC believes that rare disease patients of color are most affected by racial disparities, and have been particularly impacted throughout the Covid-19 pandemic.
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