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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, MPP, RSDSA

Shannon von Felden, MPP, RSDSA

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.

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May 9
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May 9
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Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles

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Expert Series

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May 9
12:00 pm - 1:00 pm

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles

May 15
7:00 pm - 8:00 pm

Expert Series: Serial Casting and Toe Walking

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Last Presentation

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles
Presented April 11, 2025

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