Jennifer Tjernagel was introduced to the world of Ehlers-Danlos syndrome when her teenage son was diagnosed with Vascular EDS (VEDS) in early 2017.
Outside of the EDS community, she spends a significant amount of time navigating the world of rare disease in her role of Senior Project Manager at the Simons Foundation, where she manages natural history study data collection and patient registries for many genetic disorders associated with rare neurodevelopmental conditions.
Before her work with the Simons Foundation, Tjernagel spent ten years in the pharmaceutical industry as an associate director of statistical analysis and reporting at Pfizer Global Research and Development, and also worked as a biostatistician for the University of Michigan Cardiology Department. She earned an undergraduate degree in mathematics from the University of Notre Dame, and an M.S. in biostatistics from the University of Michigan.
She previously served on our Board of Directors between 2018 and 2021, and moved her expertise to our Medical and Scientific Board in April 2021. Jennifer is also a member of the VEDS Collaborative led by Sherene Shalhub and Peter Byers at University of Washington, powered by the VEDS Movement as part of the Marfan Foundation. She aims to share the perspective of the VEDS community and supports research advancements in identifying effective treatments for all forms of EDS.