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What The Stuttering Community Can Learn From Rare Disease Advocacy [Part 1]

What The Stuttering Community Can Learn From Rare Disease Advocacy [Part 1]

Maya Chupkov... · 32:18 · 9,227 plays

From the album Proud Stutter

Description

Bobby Glen shares his family's journey, from getting a diagnosis to participating in a clinical trial, and the importance of early screening and community support. This is Part 1 of a two-part series about raising a child with HNRNPH2, a rare disease that affects speech and motor skills. Part 2 will feature his wife, Nicole, who reflects on how this experience has shaped her work as a pediatrician and her views on patient advocacy and communication differences like stuttering.If you'd like to reach out to Bobby, you can email him at glennrw@gmail.com.Support this podcast at — https://redcircle.com/proud-stutter/exclusive-contentAdvertising Inquiries: https://redcircle.com/brandsPrivacy & Opt-Out: https://redcircle.com/privacy

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