Improving diversity, equity, inclusion, and accessibility (DEIA) in PWS clinical research is a priority for FPWR, and we are working to partner with experts and other patient groups working in this area. FPWR has recently joined the Rare Disease Diversity Coalition (RDDC).
RDDC’s mission is to “address the extraordinary challenges faced by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH).” The Black Women’s Health Imperative launched RDDC in 2020 to address the challenges faced by underserved populations with rare diseases.
FPWR recently had our orientation meeting with the Executive Director of RDDC, where we learned about the background of the Coalition and had discussions about our goals within the broader context of the goals of RDDC. To that end, FPWR has joined two working groups within RDDC: the Diversity within Research and Clinical Trials (DR&CT) working group and the Provider, Patient, and Caregiver Journey (PPCJ) working group. The DR&CT Working Group aims to address systemic issues that may limit both low-income communities and communities of color from participating in research and clinical trials. The PPCJ Working Group is trying to improve the rare disease journey faced by diverse and underserved populations by empowering rare disease patients and their caregivers, as well as educating health care professionals on a broader scale, particularly related to diagnosis and improving access to treatment and clinical trials.
The RDDC working groups bring together experts in rare diseases, advocates for diversity, patients, health care professionals, and members of industry. We are looking forward to collaborating with others, offering FPWR’s perspective, and leveraging the expertise of the Coalition to improve DEIA in PWS clinical research and care.