Firefly Fund: Shining a Light on NPC
Firefly Fund is a global leader in providing support, resources, and reassurance to families living with rare neurodegenerative genetic diseases like Niemann-Pick Disease Type C that affect children and currently…Read More
Dan Rather speaks on behalf of the Firefly Fund
Please consider making a donation at Firefly.Fund/JoinTheFlight. Your donations fund new drug therapies that can slow the progression of Niemann-Pick Disease Type C and other neurodegenerative diseases that cut short…Read More
What is NPC?
Ahead of World Rare Disease Day 2020, Firefly Fund’s founders and researchers explain about Niemann-Pick Disease Type C (NPC) and how you can join the flight to help fund and…Read More
Latest News & Events
Firefly Fund Commits $500K to Novel Newborn Screening Study That Will Help Identify Rare Diseases at Birth
FOR IMMEDIATE RELEASE: May 10, 2021 CONTACT: Pam Andrews pam@fireflyfund.org Austin Nonprofit Commits $500K to Novel Newborn Screening Study That Will Help Identify Rare Diseases at Birth  Pilot Study enrolls…Read More
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