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In Rare Company Podcast

Listen on Spotify and YouTube

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Select an episode to learn more

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Ep. 1 Snacks and Advocacy Chats

Gilbert's Story

Hope's Story

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Ep. 2 What it is like to be on Elamipretide

G. VanLonden, MD

Walker Burger Letter to FDA

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Cancer Survivor MD

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AdComm Patient Testimony

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Ep. 3 The Science of Elamipretide

Ep. 3 Slide Deck

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Barth Syndrome Mechanism of Disease

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Barth Syndrome Foundation

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The Role of Mitochondria and the Phospholipid Cardiolipin

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Ep. 4 Have you heard of PPA2? ❤️

@heartofppa2

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Donate to Research USA

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Hope for Hall Inclusive Playgrounds

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HeartofPPA2.org

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Donate to PPA2 Research Netherlands

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Hope Heals Camp

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Ep. 5 "Stop Holding Us Back"

Jacob's Journey

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Crusade for Christopher

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Ep. 6 "If you know that it's helping, why are we not approving it?"

CureARS.org

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@hope4aubrie

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Ep. 7 "Are we not done fighting yet?"

Patch.com Article

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ABC7 Chicago

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Ep. 8 "The more people you connect with you realize we are a larger community"

UMDF

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Mended Hearts

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Ep. 9 "We can't take no for an answer"

LovingLoic.org

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@madelines.mission

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Ep. 10 "Our children's lives are the cost and that's not okay"

@savingsadierae

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CureSanfilippoFoundation.org

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SavingSadieRae.org

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ApproveHopeNow.org

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Ep. 11 The Barth Syndrome Clinic & Future Research

Kennedy Krieger BTHS Clinic

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TAZPOWER Journal Article

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Ep. 12 "She's the best and we would do anything for her"

Cure Sanfilippo: Lottie

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ABC20 News Story

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Illinois Times Article

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Jack's Basket

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