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Monthly Mito Expert Series

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Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts. More than 125 presentations have been recorded and posted online, making these presentations available to you at your convenience. The Mito Monthly Expert Series are generally held the first Friday of each month at 12:00pm noon. See the events calendar for our upcoming presentations.

 

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May 2021

May 14 Expert Series – Dr. Jerry Vockley – Clinical Trials: Why you should care and why you should participate. How do we know what we know?

May 14 @ 12:00 pm - 1:30 pm

Join MitoAction and Dr. Jerry Vockley from University of Pittsburgh Children's Hospital on Friday, May 14, 2021 for our monthly expert series presentation!     To view the accompanying slides, click here.   About the Speaker Gerard Vockley, MD, PhD, is an internationally recognized leader in medical genetics and the field of inborn errors of metabolism. He joined Children’s Hospital of Pittsburgh as chief of the Division of Medical Genetics in 2004 and was named professor of pediatrics at the…

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May 21 Expert Series – Ultragenyx’s LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment

May 21 @ 12:00 pm - 1:30 pm

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…

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June 2021

June Expert Series with Reneo Pharmaceuticals

June 4 @ 12:00 pm - 1:30 pm

On Friday, June 4 at 12:00pm EST, we will be joined by Dr. Madhu Davies from Reneo Pharmaceuticals for our June Mito Expert Series presentation, titled Moving Mito Medicine: Reneo Strides Study. About the Speaker Madhu Davies is the Medical Director at Reneo Pharmaceuticals. Previously, Madhu has served many roles at companies developing medicines to patients with rare diseases. For more than 25 years, she has provided leadership and advisory services working in clinical development, safety, regulatory programs, gaining broad experience of drug development…

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July 2021

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

July 9 @ 12:00 pm - 1:30 pm

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…

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You can also find these presentations in our Spotify, Google Podcasts, Apple Podcast and Amazon Music podcast library.

Moving Mito Medicine: Reneo Strides Study
Date: 06/04/2021
Speaker: Madhu Davies
Listen Now: Click Here
View Slides: Click Here
Ultragenyx’s LC-FAOD Odyssey Study: From Patient Experience to Patient Empowerment
Date: 05/21/2021
Speaker: Eliza Kruger & Kristin Voorhees
Listen Now: Click Here
View Slides: Click Here
Whole Genome Sequencing for Rare Disorders: The Future Is Here
Date: 04/09/2021
Speaker: Christine Stanley & David Keane
Listen Now: Click Here
View Slides: Click Here
Mitochondrial Defects May Lead to Autism
Date: 03/05/2021
Speaker: Dr. Douglas Wallace
Listen Now: Click Here
View Slides: Click Here
Mitochondrial Defects May Lead to Autism
Date: 03/05/2021
Speaker: Dr. Douglas Wallace
Listen Now: Click Here
View Slides: Click Here
Patients as Partners in Drug Development
Date: 02/12/2021
Speaker: Dr. Madhu Davies
Listen Now: Click Here
View Slides: Click Here
2021 Mito Town Hall Meeting
Date: 01/15/2021
Speaker: Various
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Mito Basics: Genetics, Testing & Financial
Date: 12/04/2020
Speaker: David Keane
Listen Now: Click Here
View Slides: Click Here
PTC743 (Vatiquinone) for the Treatment of Mitochondrial Disease With Associated Epilepsy
Date: 11/06/2020
Speaker: Matt Klein & Francesco Bibbiani
Listen Now: Click Here
View Slides: Click Here
Mito Community Call with the Two Disabled Dudes
Date: 09/14/2020
Speaker: Kyle Bryant
Listen Now: Click Here