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On Rare

Join us each month to listen and learn from the experts – people living with rare conditions. We’ll

Episodes

Total: 33

“You can do everything that you want to do.” Erin is living with hypochondroplasia.
2024/10/29

Erin joins David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patie

“I have 2I, but I am not 2I.” Misty’s Journey Living With LGMD2I/R9
2024/10/3

In today’s episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohri

“They told me to go home and love my child” Dawn’s daughter Vayle is living with Canavan Disease.
2024/8/12

In this emotional episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mand

“I chose to reinvent myself.” Sean is living with hereditary transthyretin amyloidosis (ATTR).
2024/7/9

Sean joins David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patie

“If I had known then what I know now, I wouldn’t have been so scared.” Alex is the mother of Hudson, a boy living with hypochondroplasia, a rare form of dwarfism.
2024/6/10

Alex joins David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patie

“We Only Live in This Moment.” Part Two of a two-part conversation with Eric, who lives with Transthyretin Amyloidosis (ATTR).
2024/4/25

In part two, Eric continues talking about his experience living with Transthyretin Amyloidosis (ATTR

“Accentuate the Positive.” Eric is living with Transthyretin Amyloidosis (ATTR).
2024/4/3

Eric joins David Rintell, Head of Patient Advocacy at BridgeBio and Mandy Rohrig, Director of Patien

“Having a brother with a rare condition has changed who I am. My family has a big heart because of my brother.”
2024/2/26

Join David Rintell, Head of Patient Advocacy at BridgeBio and Mandy Rohrig, Director of Patient Advo

We listened, we learned, we laughed and we cried! On Rare celebrates the incredible conversations of 2023!
2023/12/22

In our final episode of 2023, On Rare looks back at the wonderful, rare conversations with our extra

“In some ways, the sun has been my mortal enemy.” Jay is living with erythropoietic protoporphyria (EPP).
2023/12/4

Jay joins David Rintell, Head of Patient Advocacy at BridgeBio to talk about his experience of livin

“Improvise. Adapt. Overcome.” Dan is living with limb-girdle muscular dystrophy, type 2I/R9 (LGMD2I/R9).
2023/11/8

Dan joins David Rintell, Head of Patient Advocacy at BridgeBio to share the story of his long diagno

“People with EPP are shadow jumpers.” Brady is living with erythropoietic protoporphyria (EPP).
2023/9/14

32 seconds. That’s how much time Brady could tolerate exposure to light on his skin before the onset

“Life after the transplant wasn’t straightforward.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)
2023/8/1

Anne and Mike continue their conversation with David Rintell, Head of Patient Advocacy at BridgeBio,

“We named the new kidney - Bean.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)
2023/6/30

Anne joins David Rintell, Head of Patient Advocacy at BridgeBio to talk about how autosomal dominant

“Love isn’t love till it’s given away.” Determination has helped Lacey fulfill her dreams, but it hasn’t stopped the progression of LGMD2I/R9.
2023/6/2

Lacey joins David Rintell, Head of Patient Advocacy at BridgeBio to talk about how LGMD2I/R9 has imp

“You can brush it off or you can speak up for yourself” Kristen has been advocating for herself and others who live with achondroplasia since she was six years old.
2023/4/7

Kristen joins David Rintell, Head of Patient Advocacy at BridgeBio to tell her personal story about