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: A Look Back and A Look Ahead
In the span of ten years since Belle and Abby’s diagnoses, the Firefly Fund has advanced its mission with notable achievements. Here’s a look at their story, important milestones and…Read More
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
Firefly Fund Names Ray Anne Evans Executive Director as Organization Enters Its Second Decade
FOR IMMEDIATE RELEASE: September 16, 2026 CONTACT: Ray Anne Evans, rayanne@fireflyfund.org Firefly Fund Names Ray Anne Evans Executive Director as Organization Enters Its Second Decade Seasoned Nonprofit Leader Brings Depth…Read More
Firefly Fund Marks 10 Years, Honors Dr. Kristina Jülich with Inaugural Firefly Luminary Award
FOR IMMEDIATE RELEASE: February 23, 2026 CONTACT: Pam Andrews, pam@fireflyfund.org Firefly Fund Marks 10 Years, Honors Dr. Kristina Jülich with Inaugural Firefly Luminary Award AUSTIN, TX – Firefly Fund, a nonprofit…Read More