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pRETTy happy. | Hope and Rett syndrome
Sarah and Sam
65 episodes
4 days ago
Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun. New episodes are released every other Monday morning ... or when life let's us have a break. lol
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Parenting
Kids & Family
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All content for pRETTy happy. | Hope and Rett syndrome is the property of Sarah and Sam and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun. New episodes are released every other Monday morning ... or when life let's us have a break. lol
Show more...
Parenting
Kids & Family
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55 | Trofinetide (aka Daybue) is approved!, Comunication chat w/ Rett University's Susan Norwell, and more!
pRETTy happy. | Hope and Rett syndrome
1 hour 18 minutes 58 seconds
2 years ago
55 | Trofinetide (aka Daybue) is approved!, Comunication chat w/ Rett University's Susan Norwell, and more!

On this week's podcast, we share three things about Daybue aka Trofinetide that we learned from the community webinar hosted by Acadia Pharmaceuticals. We talked a little more about what improvements and changes were seen during the last 12-week trial. We also talked about the services that Acadia would be offering its consumers through Acadia connect.


On the podcast today we are honored to be interviewing Susan Norwell. Susan is the co-founder of Rett University and a major Rett advocate. She is on a mission to help those who are medically complex have access to literacy and education. Susan tells us a little about herself as well as how she got started with Rett University and the development of Rett U's relationship with Girl Power 2 cure. You can connect with Susan and Rett University on Instagram, Facebook or by email.


If you are a newly diagnosed family, you can find loads of information regarding Rett Syndrome on our website (linked below), including links to various foundations and support groups worldwide. And, of course, feel free to reach out to us; we love connecting with new families!

Subscribe today so that you never miss an episode. And we'll see you next time!

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⁠⁠⁠Social Media, Podcast Platforms, & more!⁠⁠⁠ - https://hopp.bio/prettyhappyplace

⁠⁠Send us a voice message⁠⁠ - https://podcasters.spotify.com/pod/show/prettyhappypod

pRETTy happy. | Hope and Rett syndrome
Bringing families and friends together from the Rett syndrome community to discuss life, research, and just have fun. New episodes are released every other Monday morning ... or when life let's us have a break. lol