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

October 21, 2022 00:58:34
Episode Cover

Navigating the Financial Minefield of Genetic Testing

There are so many misunderstandings and misconceptions of genetic testing. Dave will attempt to clarify these issues, and provide tools to empower patients to...

Listen

Episode

June 23, 2022 01:10:33
Episode Cover

Service Dogs for Children and Adults with Mito

How can a service dog help a child or adult patient with mitochondrial disease? Learn more and ask questions, such as: How can service...

Listen

Episode

April 12, 2022 00:06:35
Episode Cover

Interview with Cristy Balcells - 9/30/2007

Interview with the Director of MitoAction.org; Cristy Balcells.

Listen