On Rare

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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.

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Recent Episodes
  • “We just thought we were clumsy”. Katie and Allie are living with late-onset Tay-Sachs disease
    Apr 25, 2025 – 40:24
  • "We say it all the time: We're lucky." Philip is living with hereditary transthyretin amyloidosis (ATTR)
    Mar 25, 2025 – 39:56
  • “There’s always somebody to fight for.” Kady’s son Julien is living with Autosomal Dominant Hypocalcemia Type 1 (ADH1)
    Feb 18, 2025 – 42:07
  • Another year of incredible conversations! On Rare celebrates our 2024 podcast guests!
    Jan 3, 2025 – 37:06
  • “When numbness of the hands is a window to the heart,” Charles is living with Transthyretin amyloidosis cardiomyopathy (ATTR-CM).
    Dec 9, 2024 – 33:45
  • “You can do everything that you want to do.” Erin is living with hypochondroplasia.
    Oct 29, 2024 – 39:37
  • “I have 2I, but I am not 2I.” Misty’s Journey Living With LGMD2I/R9
    Oct 3, 2024 – 45:13
  • “They told me to go home and love my child” Dawn’s daughter Vayle is living with Canavan Disease.
    Aug 12, 2024 – 34:55
  • “I chose to reinvent myself.” Sean is living with hereditary transthyretin amyloidosis (ATTR).
    Jul 9, 2024 – 30:12
  • “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.
    Jun 10, 2024 – 43:12
  • Jonathan Fox, MD, talks about ATTR
    Apr 25, 2024 – 20:33
  • “We Only Live in This Moment.” Part Two of a two-part conversation with Eric, who lives with Transthyretin Amyloidosis (ATTR).
    Apr 25, 2024 – 21:49
  • “Accentuate the Positive.” Eric is living with Transthyretin Amyloidosis (ATTR).
    Apr 3, 2024 – 33:34
  • “Having a brother with a rare condition has changed who I am. My family has a big heart because of my brother.”
    Feb 26, 2024 – 45:39
  • “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.
    Jan 29, 2024 – 30:39
  • “I didn’t know I was part of a rare community until I started listening to the Two Disabled Dudes podcast.” Effie is the mother of Ford, a boy living with CTNNB1 syndrome and host of Once Upon a Gene.
    Jan 19, 2024 – 23:19
  • We listened, we learned, we laughed and we cried! On Rare celebrates the incredible conversations of 2023!
    Dec 21, 2023 – 44:52
  • “In some ways, the sun has been my mortal enemy.” Jay is living with erythropoietic protoporphyria (EPP).
    Dec 4, 2023 – 41:30
  • “Improvise. Adapt. Overcome.” Dan is living with limb-girdle muscular dystrophy, type 2I/R9 (LGMD2I/R9).
    Nov 8, 2023 – 34:46
  • “People with EPP are shadow jumpers.” Brady is living with erythropoietic protoporphyria (EPP).
    Sep 14, 2023 – 42:39
  • “Life after the transplant wasn’t straightforward.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)
    Aug 1, 2023 – 31:44
  • “We named the new kidney - Bean.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)
    Jun 30, 2023 – 33:03
  • “Love isn’t love till it’s given away.” Determination has helped Lacey fulfill her dreams, but it hasn’t stopped the progression of LGMD2I/R9.
    Jun 2, 2023 – 46:16
  • “You can brush it off or you can speak up for yourself” Kristen has been advocating for herself and others who live with achondroplasia since she was six years old.
    Apr 7, 2023 – 45:19
  • “When life gives you lemons, make lemon gelato!” Brent is disabled by PKAN, a rare neurodegenerative disease, yet supported by his family he is making many of his dreams come true.
    Feb 28, 2023 – 44:03
  • “I learned to meditate.” Holly and Beth learned to take care of themselves while supporting their families through their husbands’ ALS diagnoses.
    Jan 11, 2023 – 25:18
  • “They would go to see their doctors and tell them everything was fine, but everything was not fine.” Carl and Chris struggled in their own ways to accept their ALS diagnosis.
    Dec 15, 2022 – 39:58
  • “With CAH, you’re always planning and worried.” Jihan’s two daughters are living with congenital adrenal hyperplasia (CAH).
    Oct 31, 2022 – 44:38
  • “ADH1 doesn’t have me. I have ADH1” Jessica is living with autosomal dominant hypocalcemia type 1 (ADH1).
    Oct 5, 2022 – 33:10
  • ”He loves curse words! He’s a typical 15-year-old boy who is living with Canavan disease.” Dylan’s parents talk about raising their happy son.
    Sep 1, 2022 – 45:26
  • ”Mom’s just tired. I was in this daze of denial.” A teenager grapples with her mother’s diagnosis of cholangiocarcinoma.
    Jul 31, 2022 – 27:17
  • I’m a salt waster, 1 in 20,000. You don’t let it run you, you run it.
    Jun 30, 2022 – 30:11
  • “He’s a fighter and takes on whatever is thrown his way.“ Parker is living with tuberous sclerosis complex (TSC).
    May 31, 2022 – 38:21
  • “Hi, I’m nine years old. I have achondroplasia. Would you like to play?” A resilient, athletic child lives with achondroplasia
    Apr 29, 2022 – 41:20
  • “I am not going to let cancer stop me.” Driven and determined while living with cholangiocarcinoma
    Mar 31, 2022 – 43:01
  • “I just want new skin, Mom.” Courage in the face of a painful life with epidermolysis bullosa (EB)
    Feb 23, 2022 – 46:50
  • “Something was not right with my muscles.” LGMD2i and the physical struggle to do basic life activities
    Feb 23, 2022 – 40:07
  • BridgeBio Introduces - On Rare
    Feb 20, 2022 – 01:20
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