All About Koolen De-Vries Syndrome, Feat. Patient Advocate Ashley Point Wait, How Do You Spell That? A Rare Disease podcast

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Wait, How Do You Spell That? A Rare Disease Podcast »
All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point

5d ago 26:49

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In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, research and fundraising.

Connect with Ashley Point: Koolen de-Vries Syndrome Foundation - My Kool Brother - "Davis Out of the Unknown" Documentary - Donate

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