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

/

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*

 

Other Episodes

Episode

May 06, 2022 01:03:12
Episode Cover

The Menstrual Cycle as a Vital Sign in Navigating Rare Disease

Join MitoAction and board-certified family physician and Adjunct Associate professor of medicine at Georgetown University, Dr. Marguerite Duane, to explore the impact of the...

Listen

Episode

April 13, 2022 00:18:20
Episode Cover

Teen Interview with Annalise - 10/16/2008

Teen Interview with Annalise

Listen

Episode

May 19, 2022 01:29:15
Episode Cover

Mito-Autism Q&A and Parent/Patient

Listen