Firefly Chat We support research & education to cure rare neur Author: Firefly Fund We support research & education to cure rare neurodegenerative genetic diseases that affect children and have no cure. Be a guest on this podcast Language: en Genres: Science Contact email: Get it Feed URL: Get it iTunes ID: Get it Get all podcast data

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Firefly Chat Episode 7 (Part 2): NPC Moms React to Adrabetadex News
Tuesday, 2 March, 2021

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 topic of risk vs. benefit to administer the medication, as well as thoughts about adding additional therapies to treat NPC children and give them the best chance to live healthy lives.

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