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Firefly Fund × UT Dell Medical School

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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 committed to advancing and accelerating access to life-saving and disease modifying therapies 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


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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’s Pam and Chris Andrews Featured on Austin Next Podcast

October 2, 2024 (AUSTIN NEXT) Pam and Chris Andrews joined Jason Scharf’s podcast, Austin Next, a podcast exploring emerging trends, technologies, and their convergence. The episode highlights Firefly Fund’s vision…Read More

Austin Family Optimistic After FDA Approves New Drugs

October 6, 2024 (FOX) – Two Austin sisters are fighting a rare genetic disorder, but the recent FDA approval of two new drugs is offering the family a promising path forward….Read More




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