Firefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News

A continuation of Firefly Fund co-founder Pam Andrews’ discussion with NPC moms, highlighting the benefits of Adrabetadex. The moms share their fears about a future without the medication, the popular…Read More

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Firefly Chat Episode 7 (Part 1): NPC Moms React to Adrabetadex News

Firefly Fund co-founder Pam Andrews has a heartfelt and candid conversation with nine other NPC moms from around the world regarding recent news of the discontinuation of the medication Adrabetadex. This episode gives a glimpse into…Read More

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Firefly Chat Episode 6: Mallinckrodt Pharmaceuticals

Firefly Fund founders Pam and Chris Andrews chat with the Mallinckrodt team. Dr. Steve Romano, Elissa Cote, and Sheila Talafous share their journies to joining the Mallinckrodt team, how rare…Read More

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Firefly Chat Episode 5: NNPDF

Firefly Fund founders Pam and Chris Andrews celebrate NPC Awareness Month by having a conversation with National Niemann-Pick Disease Foundation, Inc., Executive Director Joslyn Crowe, MSW, MA, and NNPDF Board…Read More

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Firefly Chat Episode 4: Newborn Screening

This month’s episode of Firefly Chat focuses on Newborn Screening Awareness Month. The podcast was repurposed from a discussion at the recent World Orphan Drug Congress, featuring speakers Firefly Fund…Read More

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Firefly Chat Episode 3 (Part 2): Orphazyme

Tune in for the second installation of Firefly Fund Co-Founders Pam & Chris Andrews’ conversation with Thomas Kirkegaard Jensen Ph.D., Co-Founder and Chief Scientific Officer and Kim Stratton, CEO of Orphazyme, a…Read More

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Firefly Chat Episode 3 (Part 1): Orphazyme

Firefly Fund Co-Founders Pam & Chris Andrews enjoyed their recent Firefly Chat with Thomas Kirkegaard Jensen Ph.D., Co-Founder and Chief Scientific Officer of Orphazyme and Kim Stratton, CEO of Orphazyme. We know you will…Read More

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Firefly Chat Episode 2: John Crowley, Chairman & CEO of Amicus Therapeutics

Join Firefly Fund founders Pam and Chris Andrews as they speak about the future of rare disease treatment with John Crowley, Chairman and CEO of Amicus Therapeutics — a global,…Read More

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Firefly Chat Episode 1: Welcome to Firefly Chat

Join Firefly Fund founders Pam and Chris Andrews as they share about their own personal rare disease journey that led them to the creation of Firefly Fund, as well as…Read More

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