HeyJaredOn Rare
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.
- Indexed episodes, last 90 days
- 2
- Latest publication
- Aug 31, 2026
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- Earliest in this view
- Jul 29, 2026
Latest episodes
“You Can Be Your Own Advocate” – Adrienne is Living with ADPKD (opens the original)
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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 ultimately led to a diagnosis of autosomal dominant polycystic kidney disease (ADPKD). With no family history of the condition, Adrienne learned that her ADPKD was caused by a spontaneous genetic mutation. In this episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Vice President of Patient A
"We're here for a good time, not a long time" – Ashley is Living with EPP (opens the original)
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Excruciating pain after even brief sun exposure, years without answers, and a life-threatening liver crisis shaped Ashley's journey with erythropoietic protoporphyria (EPP), a rare genetic condition that causes severe photosensitivity. Although Ashley experienced symptoms beginning in early childhood, she wasn't diagnosed until after her 40th birthday, when she was hospitalized with advanced liver disease ultimately requiring a transplant. In this episode of On Rare, David Rintell, Head of Patie
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