Introducing the Ultragenyx LC-FAOD Disease Monitoring Programs: Our Commitment to Advancing LC-FAOD Research Globally

Join MitoAction, Laura Pisani-Betancourt and Kristin Voorhees from Ultragenyx Pharmaceutical on Friday, July 9th, 2021 at 12:00pm EST for our monthly expert series presentation!

On this webinar, Ultragenyx will discuss the development of its LC-FAOD Disease Monitoring Program (DMP), which includes both an in-clinic study and an online study that are expected to launch in 2021. Participants will learn about the studies, including how insights from the LC-FAOD community have informed the DMP’s research goals, how the DMP aims to change the future of LC-FAOD research and disease management, and Ultragenyx’s plans to launch the DMP.

*This webinar is intended for U.S. members of the MitoAction community*

 

About the Speakers

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.

 

 

Laura Pisani-Betancourt, MD is the Medical Director of Global Clinical Development at Ultragenyx Pharmaceutical.

 

 

 

Date: 07/09/2021
Speaker: Laura Pisani-Betancourt & Kristin Voorhees
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