Ultragenyx’s LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment

June 02, 2021 01:00:16
Ultragenyx’s LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment
MitoAction Expert Series
Ultragenyx’s LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment

Jun 02 2021 | 01:00:16

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Show Notes

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*

 

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