Dexter Sherrell is a rare disease advocate, speaker, and policy contributor living with Fanconi anemia, a complex genetic disorder affecting multiple organ systems. As an adult survivor with a history that includes a stem cell transplant, multiple cancers, and advanced organ complications, Dexter provides a lived experience and perspective that is exceptionally rare within the FA community. He serves on advisory boards for the Fanconi Cancer Foundation and the University of Chicago FRIENDS initiative and collaborates with research teams at Columbia University (Icahn School of Medicine), The Rockefeller University, the University of Minnesota, and Oregon State University. Dexter has contributed to peer-reviewed publications and national advocacy initiatives focused on improving access to care, patient-centered research, and policy reform. Driven by faith, resilience, and a commitment to elevating patient voices, Dexter advocates for policies that strengthen equity, financial protection, and meaningful representation for individuals living with rare and chronic conditions.
New Name, Same Commitment to Rare Diseases
The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community.
