Podcast

On Rare

Author: BridgeBio Pharma
Feed episode count: 48
Official site: https://onrarebridgebio.podbean.com
RSS: https://feed.podbean.com/onrarebridgebio/feed.xml
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Summary

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.

Episodes

Jun 3, 2026 · not_requested

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

Duration seconds: 1867
Source: https://onrarebridgebio.podbean.com/e/he-gives-everything-a-go-%e2%80%94-elliott-living-with-mocd-type-a/

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Mar 27, 2026 · not_requested

On Rare: Arielle's Long Diagnostic Journey

Duration seconds: 2803
Source: https://onrarebridgebio.podbean.com/e/on-rare-arielles-long-diagnostic-journey/

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Mar 5, 2026 · not_requested

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

Duration seconds: 2332
Source: https://onrarebridgebio.podbean.com/e/on-rare-innovators-kat-bryant-knudson-and-reimagining-collaboration-%e2%80%94-it-s-our-table/

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Jan 9, 2026 · not_requested

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

Duration seconds: 2201
Source: https://onrarebridgebio.podbean.com/e/another-year-of-purpose-and-progress-on-rare-looks-back-at-2025/

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Jan 8, 2026 · not_requested

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

Duration seconds: 2876
Source: https://onrarebridgebio.podbean.com/e/on-rare-innovators-carmen-alonso-y-la-fundacion-de-alpe-el-amor-que-das-lo-recibes-de-vuelta/

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Dec 10, 2025 · not_requested

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

Duration seconds: 2621
Source: https://onrarebridgebio.podbean.com/e/on-rare-innovators-nasha-fitter-is-redefining-the-rare-disease-playbook-%e2%80%93-who-says-we-can-t-do-this/

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Nov 6, 2025 · not_requested

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

Duration seconds: 2381
Source: https://onrarebridgebio.podbean.com/e/it-s-good-to-be-alive-greg-is-living-with-lmna-cardiomyopathy/

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Oct 10, 2025 · not_requested

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

Duration seconds: 2505
Source: https://onrarebridgebio.podbean.com/e/on-rare-innovators-carmen-draft/

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Sep 4, 2025 · not_requested

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

Duration seconds: 2366
Source: https://onrarebridgebio.podbean.com/e/i-m-still-very-grateful-for-the-life-that-i-ll-have-cerys-is-living-with-limb-girdle-muscular-dystrophy-type-2ir9/

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Jun 26, 2025 · not_requested

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

Duration seconds: 1772
Source: https://onrarebridgebio.podbean.com/e/it-s-important-to-stay-connected-daniel-is-living-with-tuberous-sclerosis-complex-tsc/

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Apr 25, 2025 · not_requested

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

Duration seconds: 2424
Source: https://onrarebridgebio.podbean.com/e/we-just-thought-we-were-clumsy-katie-and-allie-are-living-with-late-onset-tay-sachs-disease/

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Mar 25, 2025 · not_requested

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

Duration seconds: 2396
Source: https://onrarebridgebio.podbean.com/e/we-say-it-all-the-time-were-lucky-philip-is-living-with-hereditary-transthyretin-amyloidosis-attr/

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Feb 18, 2025 · not_requested

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

Duration seconds: 2489
Source: https://onrarebridgebio.podbean.com/e/there-s-always-somebody-to-fight-for-kady-s-son-julian-is-living-with-autosomal-dominant-hypocalcemia-type-1-adh1/

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Jan 3, 2025 · not_requested

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

Duration seconds: 2226
Source: https://onrarebridgebio.podbean.com/e/another-year-of-incredible-conversations-on-rare-celebrates-our-2024-rare-guests/

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Dec 9, 2024 · not_requested

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

Duration seconds: 2025
Source: https://onrarebridgebio.podbean.com/e/when-numbness-of-the-hands-is-a-window-to-the-heart-charles-is-living-with-transthyretin-amyloidosis-cardiomyopathy-attr-cm/

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Oct 29, 2024 · not_requested

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

Duration seconds: 2377
Source: https://onrarebridgebio.podbean.com/e/you-can-do-everything-that-you-want-to-do-erin-is-living-with-hypochondroplasia/

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Oct 3, 2024 · not_requested

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

Duration seconds: 2713
Source: https://onrarebridgebio.podbean.com/e/i-have-2i-but-i-am-not-2i-misty-s-journey-living-with-lgmd2ir9/

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Aug 12, 2024 · not_requested

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

Duration seconds: 2095
Source: https://onrarebridgebio.podbean.com/e/they-told-me-to-go-home-and-love-my-child-dawn-s-daughter-vayle-is-living-with-canavan-disease/

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Jul 9, 2024 · not_requested

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

Duration seconds: 1812
Source: https://onrarebridgebio.podbean.com/e/i-chose-to-reinvent-myself-sean-is-living-with-hereditary-transthyretin-amyloidosis-attr/

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Jun 10, 2024 · not_requested

“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.

Duration seconds: 2592
Source: https://onrarebridgebio.podbean.com/e/if-ihadknownthenwhati-know-now-iwouldn-t-have-been-so-scaredalexis-the-motherof-hudsona-boy-living-with-hypochondroplasia-arareformof-dwarfism/

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Apr 25, 2024 · not_requested

Jonathan Fox, MD, talks about ATTR

Duration seconds: 1233
Source: https://onrarebridgebio.podbean.com/e/jonathan-fox-md-talks-about-attr/

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Apr 25, 2024 · not_requested

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

Duration seconds: 1309
Source: https://onrarebridgebio.podbean.com/e/we-only-live-in-this-moment-part-two-of-a-two-part-conversation-with-eric-who-lives-with-transthyretin-amyloidosis-attr/

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Apr 3, 2024 · not_requested

“Accentuate the Positive.” Eric is living with Transthyretin Amyloidosis (ATTR).

Duration seconds: 2014
Source: https://onrarebridgebio.podbean.com/e/accentuate-the-positive-eric-is-living-with-transthyretin-amyloidosis-attr/

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Feb 26, 2024 · not_requested

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

Duration seconds: 2739
Source: https://onrarebridgebio.podbean.com/e/having-a-brother-with-a-rare-condition-has-changed-who-i-am-my-family-has-a-big-heart-because-of-my-brother/

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Jan 29, 2024 · not_requested

“You have to find your people. It’s the most important thing you do along this journey.” Effie is the mother of Ford, a boy living with CTNNB1 syndrome and host of Once Upon a Gene.

Duration seconds: 1839
Source: https://onrarebridgebio.podbean.com/e/youhaveto-find-your-peopleit-sthemostimportantthingyoudo-along-this-journey-effieis-the-mother-of-ford-aboy-livingwithctnnb1-syndrome-andhostof-once-u/

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