On Rare

“You Can Be Your Own Advocate” – Adrienne is Living with ADPKD

Severe high blood pressure and an unexplained feeling of heaviness led Adrienne to the emergency room at age 26, where scans revealed cysts throughout her kidneys and ult

"We're here for a good time, not a long time" – Ashley is Living with EPP

Excruciating pain after even brief sun exposure, years without answers, and a life-threatening liver crisis shaped Ashley's journey with erythropoietic protoporphyria (EP

“He Gives Everything a Go” — Elliott, Living with MOCD Type A

Severe seizures, nonstop crying, and an exaggerated startle reflex marked the beginning of Elliott’s journey with molybdenum cofactor deficiency type A (MOCD type A), an

On Rare: Arielle's Long Diagnostic Journey

Seizures, incorrect diagnoses, and years of unanswered questions shaped Arielle’s journey with autosomal dominant hypocalcemia type 1 (ADH1). ADH1 is a rare genetic condi

On Rare Innovators: Kat Bryant Knudson and Reimagining Collaboration — “It’s Our Table”

In this episode of On Rare: Innovators, hosts David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, sp

Another Year of Purpose and Progress: On Rare Looks Back at 2025

In our 2025 year-in-review episode, On Rare reflects on a year filled with meaningful conversations and powerful storytelling. Joined by David Rintell, Head of Patient Ad

On Rare Innovators: Carmen Alonso y la fundación de ALPE - "El amor que das, lo recibes de vuelta"

En el episodio inaugural de On Rare: Innovadores, una nueva serie derivada de On Rare de BridgeBio, los presentadores David Rintell, director de abogacía de pacientes de 

On Rare Innovators: Nasha Fitter is Redefining the Rare Disease Playbook – “Who says we can’t do this?”

In this episode of On Rare Innovators, Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, and David Rintell, Head of Patient Advocacy at BridgeBio, talk with

"It’s good to be alive." Greg is living with LMNA cardiomyopathy

Greg’s journey with LMNA cardiomyopathy, a rare inherited heart condition, began in high school when he experienced sudden episodes of rapid, irregular heartbeats during

On Rare Innovators: Carmen Alonso and the Founding of ALPE - "The Love You Give, You Receive Back"

In the inaugural episode of On Rare: Innovators, a new sister series of On Rare from BridgeBio, hosts David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohr

“I’m still very grateful for the life that I’ll have.” Cerys is living with Limb-Girdle Muscular Dystrophy type 2i/R9

Before she turned eight, Cerys had already faced two diagnoses, only one of which she truly understood. While being diagnosed with celiac disease as a child, unusually hi

“It’s important to stay connected” Daniel is living with Tuberous Sclerosis Complex (TSC)

Seizures, sleepless nights, and mysterious white patches on his skin marked the beginning of Daniel’s journey with Tuberous Sclerosis Complex (TSC). Diagnosed at age 6, D

“We just thought we were clumsy”. Katie and Allie are living with late-onset Tay-Sachs disease

Katie and Allie’s story began in childhood with unexplained clumsiness and subtle symptoms that intensified over time. After years of searching for answers, Katie was dia

"We say it all the time: We're lucky." Philip is living with hereditary transthyretin amyloidosis (ATTR)

Philip’s journey with ATTR began with unexplained weight loss and gastrointestinal issues that puzzled doctors for years. Despite seeing multiple specialists, his conditi

“There’s always somebody to fight for.” Kady’s son Julien is living with Autosomal Dominant Hypocalcemia Type 1 (ADH1)

When Julien was just 6 weeks old, Kady knew something wasn’t right. Despite more than 16 doctors insisting Julien was fine, Kady trusted her instincts and fought for answ

Another year of incredible conversations! On Rare celebrates our 2024 podcast guests!

In our final episode of 2024, On Rare looks back at highlights from the rewarding and rare conversations with our exceptional guests and David Rintell, Global Head of Pat

“When numbness of the hands is a window to the heart,” Charles is living with Transthyretin amyloidosis cardiomyopathy (ATTR-CM).

Charles, a recently retired cardiologist of 53 years, speaks with David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patient Advocacy at

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

Erin joins David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patient Advocacy at BridgeBio Gene Therapy, to share her experience living

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

In today’s episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patient Advocacy at BridgeBio Gene Therapy, speak with

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

In this emotional episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Director of Patient Advocacy at BridgeBio Gene Therapy, spea