Rare with Flair

Rare with Flair


43. is THAT how close i hold my phone?

April 12, 2022

hi hello hey, and welcome to another episode!


Originally, this episode was going to be our Hermansky-Pudlak Syndrome Conference episode; unfortunately, the conference was cancelled this year (again) due to Covid concerns for our very vulnerable population. While we totally understand this decision, it’s still a bummer since we look forward to Conference every year and have been missing our community since 2019. Regardless, we still wanted to talk about the importance of community and meeting people like you! In this episode, we talk about our first experiences meeting people with albinism or HPS and what that feels like. If you’re still searching for community, we highly encourage you all to seek it out!



photo of five women with HPS, including case and cass in the middle. from left to right, a brunette with a bob, case sporting a light blonde pixie cut, cass with a platinum blonde pixie, an identical twin brunette, and a woman with long, ashy blonde hair holding a white caneCase and Cass with some of their HPS community, 2016