Rare Disease Isn't Rare
Over 30 million Americans are estimated to be living with a rare disease
Rare Disease Isn't Rare
There are over 7000 known ‘rare’ diseases
Rare Disease Isn't Rare
Receiving a rare disease diagnosis can be a multi-year ‘medical odyssey
Firefly Fund: Ending the Diagnostic Odyssey for Rare Disease Patients
Watch our new video capturing the spirit of our mission – inspired by rare disease parents racing to find medicine to save their children – who, in the process, were…Read More
Matthew McConaughey on the importance of the Firefly Fund
Matthew McConaughey shares a note on the Firefly Fund, a nonprofit organization based in Austin, TX. Our mission is to fund and support the research and education necessary to accelerate…Read More
Latest News & Events
Pam & Chris Andrews featured in RARE Revolution
September 8, 2025 | We’re excited to share a new interview with Pam & Chris Andrews in RARE Revolution Magazine. A huge thank you to Nicola Miller for capturing our…Read More
Survey of NPC Families and Caregivers
July 21, 2025 | The International Niemann-Pick Disease Alliance is asking for the Niemann-Pick community’s participation in a study underway. The study is funded by Niemann-Pick UK and designed to…Read More