{"podcast":{"title":"On Rare","slug":"on-rare-5037493","podcast_index_feed_id":5037493,"rss_url":"https://feed.podbean.com/onrarebridgebio/feed.xml","website_url":"https://onrarebridgebio.podbean.com","image_url":"https://pbcdn1.podbean.com/imglogo/image-logo/13721480/ON_RARE_-_Cover_small_8a6rl.png","author":"BridgeBio Pharma","episode_count":48,"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.","last_synced_at":"2026-06-04T06:18:31.087005+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493"},"episodes":[{"title":"“He Gives Everything a Go” — Elliott, Living with MOCD Type A","slug":"he-gives-everything-a-go-elliott-living-with-mocd-type-a","published_at":"2026-06-03T15:23:30+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/he-gives-everything-a-go-elliott-living-with-mocd-type-a","url":"https://onrarebridgebio.podbean.com/e/he-gives-everything-a-go-%e2%80%94-elliott-living-with-mocd-type-a/","duration_seconds":1867,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/he-gives-everything-a-go-elliott-living-with-mocd-type-a/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/he-gives-everything-a-go-elliott-living-with-mocd-type-a.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"On Rare: Arielle's Long Diagnostic Journey","slug":"on-rare-arielle-s-long-diagnostic-journey","published_at":"2026-03-27T18:55:45+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/on-rare-arielle-s-long-diagnostic-journey","url":"https://onrarebridgebio.podbean.com/e/on-rare-arielles-long-diagnostic-journey/","duration_seconds":2803,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/on-rare-arielle-s-long-diagnostic-journey/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/on-rare-arielle-s-long-diagnostic-journey.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"On Rare Innovators: Kat Bryant Knudson and Reimagining Collaboration — “It’s Our Table”","slug":"on-rare-innovators-kat-bryant-knudson-and-reimagining-collaboration-it-s-our-table","published_at":"2026-03-05T19:52:06+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/on-rare-innovators-kat-bryant-knudson-and-reimagining-collaboration-it-s-our-table","url":"https://onrarebridgebio.podbean.com/e/on-rare-innovators-kat-bryant-knudson-and-reimagining-collaboration-%e2%80%94-it-s-our-table/","duration_seconds":2332,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/on-rare-innovators-kat-bryant-knudson-and-reimagining-collaboration-it-s-our-table/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/on-rare-innovators-kat-bryant-knudson-and-reimagining-collaboration-it-s-our-table.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"Another Year of Purpose and Progress: On Rare Looks Back at 2025","slug":"another-year-of-purpose-and-progress-on-rare-looks-back-at-2025","published_at":"2026-01-09T16:29:39+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/another-year-of-purpose-and-progress-on-rare-looks-back-at-2025","url":"https://onrarebridgebio.podbean.com/e/another-year-of-purpose-and-progress-on-rare-looks-back-at-2025/","duration_seconds":2201,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/another-year-of-purpose-and-progress-on-rare-looks-back-at-2025/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/another-year-of-purpose-and-progress-on-rare-looks-back-at-2025.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"On Rare Innovators: Carmen Alonso y la fundación de ALPE - 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\"The Love You Give, You Receive Back\"","slug":"on-rare-innovators-carmen-alonso-and-the-founding-of-alpe-the-love-you-give-you-receive-back","published_at":"2025-10-10T16:49:18+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/on-rare-innovators-carmen-alonso-and-the-founding-of-alpe-the-love-you-give-you-receive-back","url":"https://onrarebridgebio.podbean.com/e/on-rare-innovators-carmen-draft/","duration_seconds":2505,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/on-rare-innovators-carmen-alonso-and-the-founding-of-alpe-the-love-you-give-you-receive-back/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/on-rare-innovators-carmen-alonso-and-the-founding-of-alpe-the-love-you-give-you-receive-back.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"“I’m still very grateful for the life that I’ll have.” Cerys is living with Limb-Girdle Muscular Dystrophy type 2i/R9","slug":"i-m-still-very-grateful-for-the-life-that-i-ll-have-cerys-is-living-with-limb-girdle-muscular-dystrophy-type-2i-r9","published_at":"2025-09-04T14:56:43+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/i-m-still-very-grateful-for-the-life-that-i-ll-have-cerys-is-living-with-limb-girdle-muscular-dystrophy-type-2i-r9","url":"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/","duration_seconds":2366,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/i-m-still-very-grateful-for-the-life-that-i-ll-have-cerys-is-living-with-limb-girdle-muscular-dystrophy-type-2i-r9/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/i-m-still-very-grateful-for-the-life-that-i-ll-have-cerys-is-living-with-limb-girdle-muscular-dystrophy-type-2i-r9.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"“It’s important to stay connected” Daniel is living with Tuberous Sclerosis Complex (TSC)","slug":"it-s-important-to-stay-connected-daniel-is-living-with-tuberous-sclerosis-complex-tsc","published_at":"2025-06-26T22:38:46+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/it-s-important-to-stay-connected-daniel-is-living-with-tuberous-sclerosis-complex-tsc","url":"https://onrarebridgebio.podbean.com/e/it-s-important-to-stay-connected-daniel-is-living-with-tuberous-sclerosis-complex-tsc/","duration_seconds":1772,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/it-s-important-to-stay-connected-daniel-is-living-with-tuberous-sclerosis-complex-tsc/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/it-s-important-to-stay-connected-daniel-is-living-with-tuberous-sclerosis-complex-tsc.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"“We just thought we were clumsy”. Katie and Allie are living with late-onset Tay-Sachs disease","slug":"we-just-thought-we-were-clumsy-katie-and-allie-are-living-with-late-onset-tay-sachs-disease","published_at":"2025-04-25T17:35:47+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/we-just-thought-we-were-clumsy-katie-and-allie-are-living-with-late-onset-tay-sachs-disease","url":"https://onrarebridgebio.podbean.com/e/we-just-thought-we-were-clumsy-katie-and-allie-are-living-with-late-onset-tay-sachs-disease/","duration_seconds":2424,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/we-just-thought-we-were-clumsy-katie-and-allie-are-living-with-late-onset-tay-sachs-disease/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/we-just-thought-we-were-clumsy-katie-and-allie-are-living-with-late-onset-tay-sachs-disease.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"\"We say it all the time: We're lucky.\" Philip is living with hereditary transthyretin amyloidosis (ATTR)","slug":"we-say-it-all-the-time-we-re-lucky-philip-is-living-with-hereditary-transthyretin-amyloidosis-attr","published_at":"2025-03-25T17:51:28+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/we-say-it-all-the-time-we-re-lucky-philip-is-living-with-hereditary-transthyretin-amyloidosis-attr","url":"https://onrarebridgebio.podbean.com/e/we-say-it-all-the-time-were-lucky-philip-is-living-with-hereditary-transthyretin-amyloidosis-attr/","duration_seconds":2396,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/we-say-it-all-the-time-we-re-lucky-philip-is-living-with-hereditary-transthyretin-amyloidosis-attr/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/we-say-it-all-the-time-we-re-lucky-philip-is-living-with-hereditary-transthyretin-amyloidosis-attr.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"“There’s always somebody to fight for.” Kady’s son Julien is living with Autosomal Dominant Hypocalcemia Type 1 (ADH1)","slug":"there-s-always-somebody-to-fight-for-kady-s-son-julien-is-living-with-autosomal-dominant-hypocalcemia-type-1-adh1","published_at":"2025-02-18T20:46:51+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/there-s-always-somebody-to-fight-for-kady-s-son-julien-is-living-with-autosomal-dominant-hypocalcemia-type-1-adh1","url":"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/","duration_seconds":2489,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/there-s-always-somebody-to-fight-for-kady-s-son-julien-is-living-with-autosomal-dominant-hypocalcemia-type-1-adh1/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/there-s-always-somebody-to-fight-for-kady-s-son-julien-is-living-with-autosomal-dominant-hypocalcemia-type-1-adh1.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"Another year of incredible conversations! On Rare celebrates our 2024 podcast guests!","slug":"another-year-of-incredible-conversations-on-rare-celebrates-our-2024-podcast-guests","published_at":"2025-01-03T15:27:43+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/another-year-of-incredible-conversations-on-rare-celebrates-our-2024-podcast-guests","url":"https://onrarebridgebio.podbean.com/e/another-year-of-incredible-conversations-on-rare-celebrates-our-2024-rare-guests/","duration_seconds":2226,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/another-year-of-incredible-conversations-on-rare-celebrates-our-2024-podcast-guests/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/another-year-of-incredible-conversations-on-rare-celebrates-our-2024-podcast-guests.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"“When numbness of the hands is a window to the heart,” Charles is living with Transthyretin amyloidosis cardiomyopathy (ATTR-CM).","slug":"when-numbness-of-the-hands-is-a-window-to-the-heart-charles-is-living-with-transthyretin-amyloidosis-cardiomyopathy-attr-cm","published_at":"2024-12-09T17:03:32+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/when-numbness-of-the-hands-is-a-window-to-the-heart-charles-is-living-with-transthyretin-amyloidosis-cardiomyopathy-attr-cm","url":"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/","duration_seconds":2025,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/when-numbness-of-the-hands-is-a-window-to-the-heart-charles-is-living-with-transthyretin-amyloidosis-cardiomyopathy-attr-cm/transcription-requests","description":"Idempotently request low-priority transcript generation for this 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hypochondroplasia.","slug":"you-can-do-everything-that-you-want-to-do-erin-is-living-with-hypochondroplasia","published_at":"2024-10-29T16:01:21+00:00","page_url":"https://stenobird.com/podcast/on-rare-5037493/you-can-do-everything-that-you-want-to-do-erin-is-living-with-hypochondroplasia","url":"https://onrarebridgebio.podbean.com/e/you-can-do-everything-that-you-want-to-do-erin-is-living-with-hypochondroplasia/","duration_seconds":2377,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/on-rare-5037493/episodes/you-can-do-everything-that-you-want-to-do-erin-is-living-with-hypochondroplasia/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/you-can-do-everything-that-you-want-to-do-erin-is-living-with-hypochondroplasia.md","description":"Read the 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episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/on-rare-5037493/i-have-2i-but-i-am-not-2i-misty-s-journey-living-with-lgmd2i-r9.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]},{"title":"“They told me to  go home and love my child” Dawn’s daughter Vayle is living with Canavan 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