117. few but many: HPS conference 2025
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hi, hello, hey—grab your popcorn, because it’s conference time!
As many of you know, we’re two best friends with the same rare disease, living our best lives. We truly wouldn’t be friends without Hermansky-Pudlak Syndrome—or without this incredible conference. It’s where our friendship began, and where we reconnect with our amazing community year after year.
We love soaking up the latest research from rising stars in science, catching up with familiar faces, and yes… there’s always some singing involved. Since we (Case & Cass) live in different states, this conference is also one of the rare times we get to hang out in person, making it extra meaningful.
This year’s conference had a different vibe from previous ones, but it was still special in its own way. Come along as we recap the highlights!
P.S. Don’t miss our episodes from past conference years, too!
- 16. a family reunion with blood draws: the hps conference (overview of the conference itself, 2021)
- 66. hps conference: reuniting our community after four years (2023)
- 91. doctors at a bar, cute lab mice, & dancing dinosaurs: hps conference recap (2024)
listener shout-out
We love getting mail from our listeners! This week, we’re sharing an excerpt from an email we received from Jeff L., a professor of cello at Texas Tech University who has low vision. He included a link to his YouTube channel, and we were especially wowed by his performance of Bach’s 5th Cello Suite where you can see him using assistive tech glasses to read his sheet music, and his talent truly blew us away.
We’re so grateful to Jeff for sharing not only his music but also what the podcast has meant to him. It really means the world to us!
Got a story to share, a topic to suggest, or just something cool you want to tell us? Email us anytime at hello@rarewithflair.com, and if you’re cool with it, we might read it on the show!
show notes
- Case & Cass talk about Dare to be Rare, a nonprofit started by the HPS Network that sells clothes with the slogan to raise funds for rare disease research. The online store will officially relaunch May 16, 2025 so be sign up for their email list to be the first to hear about it!
- Cass mentions the Dare to be Rare jingle from 2017 (Youtube) written by Tommy Criblez of the band Ritual Talk (Bandcamp)
- Just for fun, Cass made reference to our episode 46. how we remember everything for how we are with dates
- Case is doing work on the HPS Network’s social media! Give them a follow on their various platforms:
- Cass & Case mention Rick Guidotti, a former fashion photographer turned nonprofit founder of Positive Exposure. You can also check out Rick’s story in his Ted talk
- Cass gave a talk on how your iPhone could be a powerful assistive technology device on its own! Check out her slide deck (Canva)
- Cass mentions a short documentary-style video on the HPS Network at the American Thoracic Society conference in 2024 (Youtube). It’s a little over 20 minutes, but well worth the watch!
