By Victor Ekuta, MD
My commitment to health equity did not begin in a laboratory or a classroom. It began with my family.
I am a first-generation Nigerian-American, the oldest of five children. Growing up between cultures taught me early that opportunity is not distributed equally. Neither is health. My family immigrated to the United States when I was very young, and much of my childhood was shaped by moving between communities and learning to navigate different worlds. Those experiences helped me understand that health outcomes are influenced not only by disease, but also by access, trust, representation, and the systems that surround care.
At the same time, I was developing a deep fascination with neuroscience. I was drawn to the brain because it offered a way to understand some of humanity's most fundamental questions: Who are we? How do we think? What happens when disease alters memory, identity, or behavior? That curiosity ultimately led me to pursue training in neuroscience, medicine, and public health. Along the way, I became increasingly interested in Alzheimer's disease and other neurodegenerative disorders, studying the very conditions that I would later encounter in my own family.
When my mother was diagnosed with Alzheimer's disease at a relatively young age, my professional and personal worlds collided. Concepts that had once existed in textbooks, research studies, and neuroimaging scans suddenly became part of my family's daily life. I found myself navigating the healthcare system not only as a physician-in-training, but also as a son, caregiver, advocate, and researcher.
Beyond the medical challenges of dementia itself were the practical realities familiar to many families: finding resources, coordinating care, advocating for testing, and making sense of a fragmented healthcare system during one of the most difficult periods of our lives. As both a son and future physician, I began to realize that the greatest obstacles to health are often not biological. They are structural.
Although Alzheimer's disease is not classified as a rare disease, my mother's diagnosis at a relatively young age exposed our family to many of the same challenges faced by rare disease communities: uncertainty, navigating specialists, accessing resources, and learning how to advocate within a complex healthcare system. Those lessons would later shape how I think about patients and families living with rare and complex conditions. That realization has shaped nearly every step of my career.
Throughout my training in neuroscience, medicine, and public health, I have been drawn to questions of who benefits from scientific progress—and who gets left behind. My research has focused on racial disparities in Alzheimer's disease, cognitive aging, stroke, and aphasia. I have examined why Black Americans face a disproportionately high burden of dementia while remaining underrepresented in research studies and clinical trials.
During the height of the COVID-19 pandemic, I joined the MIT linQ Catalyst Fellowship, where I worked on a project investigating pulse oximeter inaccuracies in individuals with darker skin tones. As I explored the history of the technology and spoke with physicians, engineers, entrepreneurs, and patients, I came to appreciate a sobering reality: even well-intentioned innovations can perpetuate inequities when diverse populations are not adequately represented in their development and validation.
The lesson has been remarkably consistent.
Tools are only as equitable as the systems that create them.
That same lesson applies to rare diseases.
Patients living with rare diseases often face extraordinary challenges. Many spend years searching for a diagnosis. Others struggle to access specialists, clinical trials, or life-changing treatments. For families from historically underserved communities including Black, Brown, immigrant, rural, and low-income populations these barriers are often even greater.
One experience that remains with me came through the RARE Compassion Program. My patient partner, a Black man living with sickle cell disease, shared stories of arriving at emergency departments during pain crises only to have his symptoms questioned and his suffering dismissed as substance use. Despite having a well-documented diagnosis, he frequently encountered skepticism instead of support. Over time, he began wearing a self-made bracelet identifying his condition in hopes of being believed and receiving timely care. His experience was a powerful reminder that health equity is not only about access to innovation. It is about dignity, trust, and being believed.
My experiences in rare disease research further reinforced this perspective. During an internship with Aruvant, I gained insight into emerging gene therapy approaches for conditions such as hypophosphatasia and sickle cell disease and witnessed the tremendous promise of scientific innovation. Yet I also came to appreciate that breakthrough therapies alone cannot eliminate disparities. If marginalized communities are excluded from research, face barriers to diagnosis, or cannot access emerging treatments, innovation risks widening inequities rather than reducing them.
This is why I believe equity must be built into every stage of the rare disease ecosystem from newborn screening and diagnosis to research participation, clinical trials, treatment development, and long-term care.
Today, as a neurologist, physician-scientist, and health equity advocate, I often think about the scientific tools that have shaped my career, from neuroimaging biomarkers and pulse oximeters to genetic testing, artificial intelligence, and gene therapies. These technologies have enormous potential to improve lives. But their impact ultimately depends on who is included in their development, who can access them, and whose needs are prioritized.
Those are the very questions at the heart of the Rare Disease Diversity Coalition's mission. The RDDC recognizes that achieving equity in rare disease care requires more than scientific breakthroughs; it requires addressing disparities in diagnosis, research participation, treatment access, and health outcomes among historically underserved communities.
I am honored to join the RDDC Fellowship and to partner with the E.WE Foundation, an organization whose work reflects the power of lived experience to drive meaningful change. Founded by a family navigating a Trisomy 18 diagnosis, the E.WE Foundation has become a powerful advocate for rare disease families through education, caregiver support, community engagement, and health equity initiatives. Its mission resonates deeply with me because it centers a truth I have seen throughout my career: every patient is more than a diagnosis, and every family deserves to be seen, heard, supported, and empowered.
Through this fellowship, I look forward to learning from patients, caregivers, advocates, researchers, and fellow leaders while exploring the barriers that contribute to inequities in rare disease care. I am particularly excited to work alongside the E.WE Foundation to better understand how family-centered advocacy, education, and community engagement can help create more equitable pathways to diagnosis, treatment, and long-term support.
I joined this fellowship because I believe scientific progress is most meaningful when everyone has the opportunity to share in its promise. Together, through the work of organizations like the RDDC and the E.WE Foundation, we can help build a future where every individual, regardless of race, ethnicity, income, geography, or diagnosis, has an equitable opportunity to benefit from the extraordinary advances occurring in medicine today.