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Listen Show PodCast
On Rare: Arielle's Long Diagnostic Journey
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On Rare Innovators: Kat Bryant Knudson and Reimagining Collaboration — “It’s Our Table”
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Another Year of Purpose and Progress: On Rare Looks Back at 2025
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On Rare Innovators: Carmen Alonso y la fundación de ALPE - "El amor que das, lo recibes de vuelta"
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On Rare Innovators: Nasha Fitter is Redefining the Rare Disease Playbook – “Who says we can’t do this?”
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"It’s good to be alive." Greg is living with LMNA cardiomyopathy
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On Rare Innovators: Carmen Alonso and the Founding of ALPE - "The Love You Give, You Receive Back"
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“I’m still very grateful for the life that I’ll have.” Cerys is living with Limb-Girdle Muscular Dystrophy type 2i/R9
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“It’s important to stay connected” Daniel is living with Tuberous Sclerosis Complex (TSC)
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“We just thought we were clumsy”. Katie and Allie are living with late-onset Tay-Sachs disease
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"We say it all the time: We're lucky." Philip is living with hereditary transthyretin amyloidosis (ATTR)
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“There’s always somebody to fight for.” Kady’s son Julien is living with Autosomal Dominant Hypocalcemia Type 1 (ADH1)
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Another year of incredible conversations! On Rare celebrates our 2024 podcast guests!
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“When numbness of the hands is a window to the heart,” Charles is living with Transthyretin amyloidosis cardiomyopathy (ATTR-CM).
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“You can do everything that you want to do.” Erin is living with hypochondroplasia.
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“I have 2I, but I am not 2I.” Misty’s Journey Living With LGMD2I/R9
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“They told me to go home and love my child” Dawn’s daughter Vayle is living with Canavan Disease.
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“I chose to reinvent myself.” Sean is living with hereditary transthyretin amyloidosis (ATTR).
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“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.
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Jonathan Fox, MD, talks about ATTR
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“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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“Accentuate the Positive.” Eric is living with Transthyretin Amyloidosis (ATTR).
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“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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“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.
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“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.
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We listened, we learned, we laughed and we cried! On Rare celebrates the incredible conversations of 2023!
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“In some ways, the sun has been my mortal enemy.” Jay is living with erythropoietic protoporphyria (EPP).
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“Improvise. Adapt. Overcome.” Dan is living with limb-girdle muscular dystrophy, type 2I/R9 (LGMD2I/R9).
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“People with EPP are shadow jumpers.” Brady is living with erythropoietic protoporphyria (EPP).
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“Life after the transplant wasn’t straightforward.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)
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“We named the new kidney - Bean.” Anne is living with autosomal dominant polycystic kidney disease (ADPKD)
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“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.
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“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.
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“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.
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“I learned to meditate.” Holly and Beth learned to take care of themselves while supporting their families through their husbands’ ALS diagnoses.
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“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.
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“With CAH, you’re always planning and worried.” Jihan’s two daughters are living with congenital adrenal hyperplasia (CAH).
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“ADH1 doesn’t have me. I have ADH1” Jessica is living with autosomal dominant hypocalcemia type 1 (ADH1).
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”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.
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”Mom’s just tired. I was in this daze of denial.” A teenager grapples with her mother’s diagnosis of cholangiocarcinoma.
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I’m a salt waster, 1 in 20,000. You don’t let it run you, you run it.
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“He’s a fighter and takes on whatever is thrown his way.“ Parker is living with tuberous sclerosis complex (TSC).
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“Hi, I’m nine years old. I have achondroplasia. Would you like to play?” A resilient, athletic child lives with achondroplasia
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“I am not going to let cancer stop me.” Driven and determined while living with cholangiocarcinoma
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“I just want new skin, Mom.” Courage in the face of a painful life with epidermolysis bullosa (EB)
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“Something was not right with my muscles.” LGMD2i and the physical struggle to do basic life activities
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BridgeBio Introduces - On Rare
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