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

Proud Stutter

A tartalmat a Maya Chupkov biztosítja. Az összes podcast-tartalmat, beleértve az epizódokat, grafikákat és podcast-leírásokat, közvetlenül a Maya Chupkov vagy a podcast platform partnere tölti fel és biztosítja. Ha úgy gondolja, hogy valaki az Ön engedélye nélkül használja fel a szerzői joggal védett művét, kövesse az itt leírt folyamatot https://hu.player.fm/legal.

5M ago 32:18

MP3•Epizód kép

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 [email protected].

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106 epizódok

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