On Rare
de BridgeBio Pharma
Último episodio
“We’re Asking for Common Sense” – Thibault’s Experience with…
“We’re Asking for Common Sense” – Thibault’s Experience with…
Sobre este podcast
Join us each month to listen and learn from the experts – people living with rare conditions. We’ll discuss the challenges and triumphs of life with a rare genetic condition and hear from scientists working to develop new medicines. Honest conversations with the rare community, led by the patient advocacy team at BridgeBio. Subscribe below to catch each episode as it goes live.
Episodios
Los 20 episodios más recientes de 53
- “We’re Asking for Common Sense” – Thibault’s Experience with Achondroplasia · 30 min · Episodio 53Thibault’s experiences living with achondroplasia have helped shape his passion for accessibility, inclusion, and rare disease advocacy. Based in Amsterdam, he works in…
- “You’re Still a Person; You Still Have Feelings” – Gwyn is Living with Achondroplasia · 28 min · Episodio 52At 27, Gwyn is a college student pursuing a career as a dietitian and the host of A Little View, a podcast that creates space for candid conversations within the dwarfism…
- On Rare Innovators: The Dream Merchant. Stan Crooke and the founding of n-Lorem · 32 min · Episodio 51In this episode of On Rare: Innovators, David Rintell and Mandy Rohrig of BridgeBio, speak with physician, scientist, and drug developer Stan Crooke. Stan is the founder of the…
- “You Can Be Your Own Advocate” – Adrienne is Living with ADPKD · 36 min · Episodio 50Severe 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 ultimately…
- "We're here for a good time, not a long time" – Ashley is Living with EPP · 38 min · Episodio 49Excruciating pain after even brief sun exposure, years without answers, and a life-threatening liver crisis shaped Ashley's journey with erythropoietic protoporphyria (EPP), a…
- “He Gives Everything a Go” — Elliott, Living with MOCD Type A · 31 min · Episodio 48Severe 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 · 47 min · Episodio 47Seizures, incorrect diagnoses, and years of unanswered questions shaped Arielle’s journey with autosomal dominant hypocalcemia type 1 (ADH1). ADH1 is a rare genetic condition in…
- On Rare Innovators: Kat Bryant Knudson and Reimagining Collaboration — “It’s Our Table” · 39 min · Episodio 46In 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, speak with…
- Another Year of Purpose and Progress: On Rare Looks Back at 2025 · 37 min · Episodio 45In 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 Advocacy…
- On Rare Innovators: Carmen Alonso y la fundación de ALPE - "El amor que das, lo recibes de vuelta" · 48 min · Episodio 44En 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?” · 44 min · Episodio 43In 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 Nasha…
- "It’s good to be alive." Greg is living with LMNA cardiomyopathy · 40 min · Episodio 42Greg’s journey with LMNA cardiomyopathy, a rare inherited heart condition, began in high school when he experienced sudden episodes of rapid, irregular heartbeats during track…
- On Rare Innovators: Carmen Alonso and the Founding of ALPE - "The Love You Give, You Receive Back" · 42 min · Episodio 41In 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 Rohrig…
- “I’m still very grateful for the life that I’ll have.” Cerys is living with Limb-Girdle Muscular Dystrophy type 2i/R9 · 39 min · Episodio 40Before 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 high CK…
- “It’s important to stay connected” Daniel is living with Tuberous Sclerosis Complex (TSC) · 30 min · Episodio 39Seizures, 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, Daniel…
- “We just thought we were clumsy”. Katie and Allie are living with late-onset Tay-Sachs disease · 40 min · Episodio 38Katie 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 diagnosed…
- "We say it all the time: We're lucky." Philip is living with hereditary transthyretin amyloidosis (ATTR) · 40 min · Episodio 37Philip’s journey with ATTR began with unexplained weight loss and gastrointestinal issues that puzzled doctors for years. Despite seeing multiple specialists, his condition…
- “There’s always somebody to fight for.” Kady’s son Julien is living with Autosomal Dominant Hypocalcemia Type 1 (ADH1) · 41 min · Episodio 36When 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…
- Another year of incredible conversations! On Rare celebrates our 2024 podcast guests! · 37 min · Episodio 35In 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 Patient…
- “When numbness of the hands is a window to the heart,” Charles is living with Transthyretin amyloidosis cardiomyopathy (ATTR-CM). · 34 min · Episodio 34Charles, 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…
