hi hello hey, we’re exhausted but invigorated!

We know we say “this is a special episode” a lot (because, honestly, every episode is special to us). But this one really is: it’s only the third time in Rare with Flair history that we’ve recorded almost entirely in the same room!

If you’re new here, you might’ve thought we always record together, but nope! With Case in Tennessee and Cass in Ohio, we’re usually recording from separate states. This time, against all odds (and at the cost of some sleep), we managed to capture a semi-thorough recap of our time at the American Thoracic Society (ATS) conference in San Francisco!

This was Cass’s third ATS conference with the Hermansky-Pudlak Syndrome (HPS) Network, but it was Case’s first. The conference is a huge opportunity to connect with researchers, biotech and pharma reps, and organizations who can help us push toward a cure for the pulmonary fibrosis many people with HPS develop.

There’s a lot of advocacy, booth-running, and behind-the-scenes hustle, and we’re pulling back the curtain to let you in on all of it. We hope you enjoy our chaotic, sleep-deprived, heart-filled recap of this fulfilling, jam-packed week!

hi hello hey, it’s time for a little catch up on what we’re into lately!

Once or twice a year, we like to take a minute (or an hour) to catch you guys up on what we’ve been up to aside from going to the Hermansky-Pudlak Syndrome conference and talking all things disability.

On this edition of “What Are We Into Lately?,” we talk about the books, music, TV shows, hobbies, and lifestyle changes that have occupied our year thus far. Spoiler alert: we’re each other’s biggest influencers, and we fill you in on all the things one of us recommended that the other one has tried and loved.

Have an idea for a future episode or want to comment on something we’re into? You can always send us an email at [email protected], and we’ll answer it on the next episode (if you want us to, of course!).

hi hello hey, let’s go to the doctor!

It’s been a hot minute since we did an episode on chronic health, but we’re BACK and ready for action!

On this episode, we’re diving into what it really means to be your own advocate in the healthcare system, especially when you have a rare disease and a vision impairment.

From the constant parade of specialist appointments to the exhausting task of explaining your condition to every new doctor (yes, we’ll gladly spell it… again), we’re sharing our lived experiences navigating medical systems that often aren’t built with us in mind.

This episode pairs perfectly with a couple of others from our archive:

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!

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 [email protected], and if you’re cool with it, we might read it on the show!

hi hello hey, let’s talk about skincare today!

Skincare has gotten really trendy online thanks to creators on TikTok and Instagram telling your which creams to use to make you look younger. While we’ve talked about makeup and sunscreen some time back, we haven’t done a full skincare routine episode. Even if you’re not a chronically online girlie, cleansing, sunscreen, and moisturizing are for everyone! Join us as we discuss our skin, and the products we’re currently using (as of March 2025) to make our skin a lovely place to be.

Also, thank you to Johannah for the listener question that inspired this episode! If you have any thoughts or episode ideas, please email us at [email protected]!

hi hello hey, ready to rock out at a concert?

It’s no secret that we love music, especially seeing the artists we love live. This week, we answer a listener question from Delaney, a loyal fan of Jesse McCartney, about shows we’ve seen, artists we’ve met, and accommodations we’ve either requested or made ourselves to make the most of our show experience. Ever wonder how to go to a festival if you’re chronically ill? Cass takes us on her journey to enjoy the WonderBus festival for the three years she attended it. Which artist do you think Casey has seen the most? Guess you’ll have to listen to find out!

Do you want your question turned into an episode?? Shoot us an email at [email protected], and we just might!

hi hello hey, sometimes we can’t see things… and maybe that’s okay?

Like most of our episodes, this topic was inspired by something in our real lives – in this case, a fantastic interview with Camryn Yule (YouTube), a person with albinism who was in Wicked! No spoilers, but Camryn talks about the need to “read the room” and be discerning about when to request accommodations, and when to let it go, to not hold up production in a fast-paced environment. This sentiment really resonated with us, and we knew we had to deconstruct it on the pod.

Before you get worried that we’re not advocating for ourselves, we’re not recommending putting advocacy aside! We’ve talked about making sure you have what you need and disclosing in a variety of episodes, including:

Instead of talking about times we haven’t advocated for our needs, we focus on the situations it’s absolutely necessary to make your voice heard, and say that anything beyond the necessary is up to your discretion. Sometimes, it’s okay not to see every little thing if the disruption of having your needs met doesn’t outweigh the benefit you get from seeing.

Do you agree with us? Let us know what times are non-negotiable or completely skippable!

hi hello hey, the internet has revealed who we truly are with iron-clad proof.

If you’ve followed us even for a little bit, you’ll know that we love a personality test. We’ve talked a lot about personality over the years, from deep dives into established frameworks to fun, creative takes on what makes us us. This time, we’re delving into the world of completely invented frameworks by random people on our Instagram reels feed, and we’re super into it.

If you’ve loved our past episodes on personality, you won’t want to miss this one! And if you haven’t heard the past episodes, now’s the time!