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: Shining a Light on Rare Disease

Firefly Fund is a global leader in providing crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children and currently have no cure.

Dan Rather speaks on behalf of the Firefly Fund

Your donations fund crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children and currently have no cure.

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


Our Lived Experience

Parents Pam and Chris Andrews noticed their eldest daughter Belle was showing developmental delays in gross and fine motor skills and coupled with other concerns they had such as a swollen spleen and low platelets, the parents and their young daughter began a multi-year diagnostic odyssey that spanned over a dozen therapists and medical specialists.

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Latest News & Events
Firefly Fund Announces $5 Million Gift

FOR IMMEDIATE RELEASE February 27, 2024 Firefly Fund Announces $5 Million Gift to Create Center for Rare Disease at UT Austin Dell Medical School Austin, Texas – To mark World…Read More

Texas Infant to Become Fifth Child to Receive Life-Saving Gene Therapy Treatment on U.S. Soil

DALLAS, Feb. 05, 2024 (GLOBE NEWSWIRE) — Sufyan Pashai, a 4-month-old from Dallas, will travel to Minnesota and become the fifth child to receive life-saving gene therapy treatment on U.S….Read More


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