Rare Disease Diversity Coalition Awards Historic Solution Grants to Reduce Rare Disease Disparities Crisis During the Pandemic

Rare Disease Diversity Coalition Awards Historic Solution Grants to Reduce Rare Disease Disparities Crisis During the Pandemic

WASHINGTONOct. 4, 2021 /PRNewswire/ — Today, the Rare Disease Diversity Coalition announced it will award $600,000 in “solution grants” to reduce disparities in the rare disease community.

The grants to RDDC’s five Steering Committee working groups will help identify the most pressing problems – and the most promising solutions – in the following areas:

  • 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

“We started the Rare Disease Diversity Coalition to unite health-care 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. Awarding the first Working Group Grants less than one year after our inception showcases our commitment to making a difference,” said Linda Goler Blount, MPH, President and CEO of Black Women’s Health Imperative and RDDC Steering Committee Member.

The RDDC working groups are comprised of rare disease experts, health and diversity advocates, and industry leaders 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 working groups were invited to submit proposals during the summer of 2021 with a focus on achievable results within the next 5-12 months.

The grants will support the following projects:

  • Create a family health history pilot to improve awareness on its importance for communities of color – the pilot will be used for a future nationwide effort.
  • Develop patient education for genetic testing and the exchange of genetic testing tools and resources.
  • Start a best-in-class industry guidance on how to develop and deploy culturally sensitive and inclusive patient materials.
  • Research, evaluate, and confirm the composition of the patient base in rare disease clinical trials to increase diversity in research.
  • Create a principal investigator/study coordinator pipeline program to support increased participation of communities of color in research and clinical trials.
  • Develop research and clinical trial videos for patient apps as educational tools and resources for patients to support increased participation from communities of color.
  • Prepare health care provider cultural sensitivity, awareness, and bias training for providers with CME accreditation.
  • Create a medical student webinar series to increase education and exposure to rare diseases in communities of color.
  • Produce a medical school pipeline initiative to build trust and improve engagement with healthcare professionals especially in communities of color.
  • Start a communities of color rare disease fellowship program to work with RDDC member organizations to support graduate students in the health sciences.
  • Conduct an analysis to better understand the needs of diverse rare disease patients and caregivers looking at challenges related to patient/provider communications and engagement and access to healthcare. This project will include an audit of the efforts of rare disease patient organizations to gauge available best practice tools, education, and resources to aide rare disease patients from communities of color.
  • Create a rare disease diversity advocacy policy proposal, build congressional support, and establish advocacy opportunities for RDDC members and patients. Track and respond to federal executive branch regulatory proposals of importance to rare disease diversity.

Launched in May 2020 by the Black Women’s Health Imperative, the Rare Disease Diversity Coalition (RDDC) was formed to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare disease on communities of color, which have been impacted even more during the pandemic.

About the Rare Disease Diversity Coalition
More than 30 million—or 1 in 10—Americans have a rare disease. For rare disease patients of color, racial disparities have caused a crisis. The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color.

The RDDC brings together rare disease experts, health, and diversity advocates with industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color. For more information on the RDDC’s work visit Rise to Rare.

To learn more, visit: www.RareDiseaseDiversity.org

About the Black Women’s Health Imperative
The Black Women’s Health Imperative is a national non-profit organization dedicated to advancing health equity and social justice for Black women across generations, through policy, advocacy, education, research, and leadership development. The organization identifies the most pressing health issues that affect the nation’s 22 million Black women and girls and invests in the best of the best strategies that will accomplish its goals. www.bwhi.org

Source: PRNewswire