16. a family reunion with blood draws: the HPS conference

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hi hello hey, it’s that extra special time of year!

What time of year, you ask? It’s the annual Hermansky-Pudlak Syndrome Network conference time of year! We look forward to March every year because going to conference is that exciting. Since we teased this as a future episode topic, we wanted to give our listeners a peek into what the HPS Conference is like. Some things may surprise you, and just like the title hints, we do get our blood drawn!

We hope that even if you don’t have HPS or have never been to a medical conference, you’ll still enjoy this episode. This is just another part of our lives — the “rare” part — that have shaped us into the “flairful” women you know (we love fake words).

episode summary

First, we start by thanking everyone who has supported our fundraiser! For more details, check out the show notes below. After plugging our social medias (below), we explain what the conference is. Following, we talk about why we started going and reiterate how we met. Then, we take you on a trip through our experience on each day of the conference. After, we dive into why we sing at the conference and all the research done behind the scenes. Finally, we end on a classic RWF game of This or That: Conference Edition.

Since we plugged our socials, I’ll link them here again. As always, please reach out with questions, comments, or funny anecdotes.

• @RareWithFlair on Twitter
• @Rare.With.Flair on Instagram
• Rare with Flair on Facebook
• hello@rarewithflair.com

show notes

• We want to send a massive thank you to everyone who has bought a shirt or donated to our tshirt fundraiser!!! When we recorded, we were up to $1,300 raised, but now we’re pushing $1,900! We can’t thank you all enough, and the campaign ends 3/16/21 so you still have time to rock some original Rare with Flair gear!
• Cass references episode 7 on music where we tease this episode a little
• Cassandra gives a quick summary on what Hermansky-Pudlak is
• Cass tells the HPS Network was founded in the early nineties (1992 after a fact check)
• Casey mentions getting diagnosed as a late teen and Cass mentions having Crohn’s disease, which you can hear more detail about on episode 6 on our chronic illness journeys
• Cass mentions being a wild child from episode 5 on our schooling stories
• Case laughs about our intro episode, where we tell the story of how we met, because we’ve grown so much as podcasters
• Casey mentions our nonprofit’s nonprofit, Dare to be Rare, which supports the HPS Network as well as other rare disease networks!
• Case and Cass talk about how they sing with three other women for the HPS Network’s dinner ball so the links for some past performances are below:
  • 2019: Candy Medley
  • 2017: TV-themed Medley (starts at 2:50 lol technical issues)
  • 2016: Wizard of Oz Medley