Health disparities have been the focus of my research initiatives ever since I began my journey as a public health practitioner. Given the blessing of attending prestigious Historically Black Colleges and Universities (HBCUs), I have witnessed firsthand the impacts that inequitable health policies and research interventions inflict on marginalized communities. Inequitable access to care, especially involving rare diseases, has disproportionately affected such communities, which highlights the historical remnants of healthcare discrimination that still pervades today. Being a minority who suffers from Dupuytren’s Contracture, a rare disease that is mostly observed in white populations, these inequities are personal. The reason for pursuing a fellowship within the field of rare diseases involves the experiences of both the community I live in and those of my own. The lack of inclusion in rare disease testing, diagnosis, and clinical trials is both disheartening to observe, but integral to the impact I look to have on the rare disease community, the literature, and future research.
As a Master of Public Health (MPH) scholar at Morehouse School of Medicine, my journey has taken me through various roles that involve research on marginalized communities, specifically the impact that policy decisions have on the utilization, access, and disparities within social service and health programs among African American populations. This work speaks to my dedication to the communities I love and care for, which is embedded in my pursuits and goals. Within the Rare Disease Diversity Coalition fellowship, my goal is clear: to contribute my skills and passion to an organization dedicated to unraveling the complexities of rare diseases and promoting the inclusion of minority communities in rare disease research. This fellowship aligns seamlessly with my commitment to addressing health disparities, a cause that resonates deeply with my public health journey. The decision to apply for a rare disease fellowship stems from my belief in the power of inclusivity in healthcare, amplifying the urgency for diverse perspectives in research and advocacy. This fellowship represents an opportunity to contribute to groundbreaking work that transcends conventional boundaries.
As part of this fellowship, I am thrilled to work with the Undiagnosed Disease Network—an organization at the forefront of addressing the questions surrounding rare diseases. This experience holds promise in being both enlightening and transformative, providing me with unique insights into the challenges faced by individuals navigating undiagnosed and rare conditions. During this fellowship, I aspire to gain a full understanding of the challenges faced by those with rare diseases and undiagnosed conditions, with an aim to contribute to the development of strategies that promote inclusivity, equitable access to rare disease treatment and care, and advancements in rare disease research, primarily involving minority-focused participation.
This fellowship aligns with my future goals and aspirations as a public health researcher by providing a platform to enhance my research skills, deepen my understanding of rare diseases, and contribute to initiatives that bridge gaps in public health and healthcare. This rare disease fellowship is not just a professional opportunity; it's a chance to make a meaningful impact on individuals' lives within the rare disease community, a community I, too, am a part of. I truly am blessed to be graced with the opportunity to work with the RDDC, the UDN, and the rare disease community in its entirety.
March 29, 2024