EP 19 Nicole Legro

A Voice for the Undiagnosed: Dr. Nikki Legro on FAM177A1, Genetic Advocacy, and Reimagining Maternal-Fetal Medicine - In this powerful episode of Rare Awareness Radio, we sit down with Dr. Nicole “Nikki” Legro—a physician, researcher, and rising leader in the rare disease space. Currently a third-year OB/GYN resident at Georgetown University, Nikki reflects on the long and winding path that led to her groundbreaking work helping to define the FAM177A1-related disorder through the NIH’s Undiagnosed Diseases Network and Stanford University. She shares her early inspirations, the challenges and triumphs of co-authoring a multi-year publication in Genetics in Medicine, and what it means to advocate for families navigating life with an undiagnosed or rare genetic condition. Nikki also discusses the future of maternal-fetal medicine, the growing role of AI in genetic diagnostics, and the deep human connections that drive her work forward. This episode is a must-listen for anyone passionate about the intersection of research, advocacy, and patient-centered care in the world of rare disease. Topics Include: The origin story of Nikki’s interest in rare genetic conditions Her work with the Hawkins family and the FAM177A1 research fund Challenges in publishing rare disease findings Evolving approaches to prenatal genetic screening The future of OB/GYN and gene therapy Building trust and trauma-informed care with patients and families 📣 Subscribe and share to support awareness, research, and advocacy for the rare disease community. #RareDiseaseAwareness #GeneticAdvocacy #WomenInMedicine #MaternalFetalMedicine #FAM177A1