Name: Andra Stratton

Position: Program Manager for Rare As One Project, a Chan Zuckerberg Initiative

Bio: Andra Stratton has an extensive track record of advocacy and leadership in rare disease clinical research. Her past accomplishments include advising on clinical trial development, organizing and leading patient advisory meetings, and serving on ICON’s (formerly PRA Health Sciences) Rare Disease Advisory Committee, where she contributed to the creation of tools such as the Patient-Centric Trial Development Toolkit. She has also served on Global Genes’ Patient Advisory Council, hosted Rare in Common, a podcast sharing rare disease stories, and was recognized with the PM360 Elite Patient Advocate Award in 2017. In addition to her current role, she remains deeply involved in the lipodystrophy community as Chief Advisor to Lipodystrophy United and a member of the Global Lipodystrophy Leaders Council.

Why I’m passionate about patient engagement: “It is rare (pun intended) to do what you love and love what you do. I didn’t plan this journey, but like so many others in the rare disease community, I found myself unexpectedly thrust into it. My personal experience as a patient profoundly reshaped my life and compelled me to act—not only for myself but for others navigating similar paths. Since entering this space, one of my guiding principles has been to make the road smoother for the next person. My diagnosis gave me knowledge and power to better understand my health journey and in joining the rare disease community, my goal has been to ensure that individuals and families facing rare diagnoses feel more supported, more empowered, and less alone. This award holds deep personal meaning. It is more than an honor—it is a signpost that the work I am doing is making a difference. It tells me that I am on the right path, and it fuels my ongoing commitment to use my experience, including the wins and especially the losses—to amplify the impact of allowing those most impacted by a disease to not only be a part of, but to drive the conversation and to deeply incorporate that expertise to improve and accelerate research at all stages of drug development.”