Join MitoAction, Eliza Kruger and Kristin Voorhees from Ultragenyx Pharmaceutical on Friday, May 21, 2021 at 12:00pm EST for our monthly expert series presentation!
On this webinar, Ultragenyx representatives will discuss how insights and feedback from people living with LC-FAOD shaped the design of a new study: LC-FAOD Odyssey. This study uses digital technology developed by PicnicHealth to collate and organize medical records, allowing people living with LC-FAOD to contribute their anonymized data to advance research. Participants will learn about the study goals and how the community can participate, as well as see a demo of the technology and the opportunities it offers to patients and caregivers.
*This webinar is intended for U.S. members of the MitoAction community*
Eliza Kruger is a Director of Global Health Economics and Outcomes Research (HEOR) at Ultragenyx and an expert in HEOR. She is passionate about supporting better, evidence-based decision-making in healthcare, particularly in rare diseases. She has 10 years of experience in academia, consulting andpharmaceutical industry in Singapore and the United States. She is originally from Australia, where she completed her undergraduate in Economics and Master of Health Economics.
Kristin Voorhees is an Associate Director of Patient Advocacy at Ultragenyx Pharmaceutical where she has the honor of representing the experiences of rare disease communities and helping to integrate the perspectives of patient and families into company and program decision-making. Kristin has more than 10 years of experience in spearheading patient engagement and patient-focused programs in close collaboration with patients, caregivers, clinicians, researchers, and the biopharmaceutical and diagnostics industries. Kristin holds a BA in Communication Studies from James Madison University and a Master of Health Communication from Emerson College and Tufts School of Medicine.Date: 05/21/2021
Eliza Kruger & Kristin Voorhees
Join MitoAction and Dr. Mark Korson, VMP Genetics, as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community.