Alexandra is a third-year medical student at the Warren Alpert Medical School of Brown University. She earned her bachelor's degree in Anthropology and Biology from Brown University. Since her younger sister’s diagnosis with OCNDS in 2016, Alexandra has been dedicated to rare disease advocacy, collaborating with Dr. Okur on multiple projects. From 2022 to 2024, she served on the Simons Searchlight Community Advisory Committee, advising and guiding research and community initiatives on behalf of all Simons Searchlight participants and genetic communities. Her efforts notably focused on expanding resources for families regarding puberty, menstruation, and the transition to adulthood. In partnership with the National Organization for Rare Disorders (NORD), Alexandra served as coalition lead in authoring and spearheading stakeholder engagement for the passage of Rhode Island’s Rare Disease Advisory Council legislation (SB474/HB5023). She led a project aimed at establishing Quality of Life-Disability as a robust outcome measure for OCNDS. In her free time, Alexandra enjoys knitting, experimenting with new recipes, and spending time outdoors. Alexandra continues to collaborate with Dr. Rushing on various data analysis projects to help better understand OCNDS over the lifespan.
Alexandra Lee
