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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.
On Rare
Honest conversations with the rare community, led by our hosts, David Rintell, head of patient advocacy at BridgeBio, and Mandy Rohrig, associate director of patient advocacy at BridgeBio Gene Therapy.
Episodes
Thursday Mar 31, 2022
Thursday Mar 31, 2022
In her 20s, Chaundra believed she was living the dream with a graduate degree and a new, exciting job. Unfortunately, at the age of 29, results from a routine blood test led to a diagnosis of cholangiocarcinoma. Six years later, Chaundra has endured chemotherapy treatments, surgeries, biopsies, multiple clinical trials and much more. Despite her diagnosis, Chaundra is determined and driven. She has taken on new professional opportunities in different cities, has been promoted in her work, fallen in love, and even, run for political office and won.” She tells David Rintell, head of patient advocacy at BridgeBio, “I am not going to let cancer stop me.”
Dr. Carl Dambkowski, chief medical officer at QED Therapeutics, an affiliate company of BridgeBio, also joins the conversation to describe cholangiocarcinoma, explain why it is difficult to detect and diagnose, and provide updates on how the recent advances in genetic testing has changed the treatment landscape for people with cholangiocarcinoma.
Wednesday Feb 23, 2022
Wednesday Feb 23, 2022
Brady is a five-year-old who is living with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic skin condition. His mother, Eileen, describes what it was like to discover that Brady has RDEB and tells us how she is both the mother of a brave, happy little boy and the nurse who causes him pain during his daily wound care. RDEB has changed their lives.
Sanuj Ravindran, M.D., executive chairman of BridgeBio’s Phoenix Tissue Repair, joins the conversation to talk about the condition and explain how EB affects the body internally and externally.
Wednesday Feb 23, 2022
Wednesday Feb 23, 2022
John and Tony are living with limb girdle muscular dystrophy type 2i (LGMD2i), a rare genetic condition. And while they did not know each other before their joint podcast interview, their stories mirror each other in many ways. They tell us about their challenging and long diagnostic journeys and how LGMD2i has changed the trajectory of their lives and forced them to navigate the world in ways that are often isolating.
Douglas Sproule, M.D., M.Sc., chief medical officer of BridgeBio’s ML Bio Solutions explains how muscles are damaged in people with muscular dystrophy and how this damage affects the body overall.
Sunday Feb 20, 2022
Sunday Feb 20, 2022
BridgeBio Pharma introduces On Rare, a podcast about people living with rare conditions.