New Podcast Episode: All About Koolen de-Vries Syndrome, feat. Patient Advocate Ashley Point

Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back with a new episode. This week, Colby is sitting down with 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

Check out the episode below:

If you want to save this one for later, you can also listen to the episode at this link. Or, you can find the episode on Apple Podcasts, Google Podcasts, Spotify and Amazon. You can also now find our podcast over at the Patient Worthy YouTube channel. Subscribe today!