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

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

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

Kayl/thalya💭

60 min
Knowledge
Lire

Description

<p>Join MitoAction, Eliza Kruger and Kristin Voorhees from&nbsp;<a style="box-sizing: border-box; background-color: transparent; color: #7ac142; transition: all 0.3s ease 0s; outline: none !important;" href="https://www.ultragenyx.com/" target="_blank" rel="noopener">Ultragenyx Pharmaceutical</a>&nbsp;on Friday, May 21, 2021 at 12:00pm EST for our monthly expert series presentation!</p> <p>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.</p> <p><em>*This webinar is intended for U.S. members of the MitoAction community*</em></p> <div>&nbsp;</div>

Diffuseur

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