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MitoAction

MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

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The Power of Rare Disease Advocacy

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Advocates are the key to creating real change.  Learn the power that you as a patient and caregiver have, what you can do to move the needle for your rare disease and how to get more involved!

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About the Speaker

Shannon von Felden

Shannon von Felden

Shannon von Felden is the Director of Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. She works with rare disease advocates across the country to engage at the local, state, and federal level. She began her career on Capitol Hill as a Legislative Assistant for Congresswoman Shelley Berkley (NV) working on health care and veterans affairs issues. Shannon has worked with national nonprofit organizations to further their policy and advocacy goals including Juvenile Diabetes Research Foundation and National Osteoporosis Foundation. She received her Master of Public Policy from American University.

Upcoming
Events

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Oct 5
6:00 pm - 7:00 pm Event Series

CPEO & Me

Oct 6
12:00 pm - 1:00 pm

Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities

Oct 6
1:15 pm - 2:15 pm

Weekly Support Call

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Expert
Series

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Upcoming Presentations

Oct 6
12:00 pm - 1:00 pm

Expert Series: Ultra-Rare Mitochondrial Diseases: Development Challenges and Opportunities

Nov 1
7:00 pm - 8:00 pm

Expert Series: LCHADD Retinopathy Update: Moving Toward a Treatment

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Last Presentation

Episode 2: Wondering Wednesdays: Ask the Genetic Counselor (February 22, 2023)
Presented August 28, 2023

P.O. Box 310
Novi, MI 48376
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info@mitoaction.org

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