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Shining a Light on Rare Disease Our mission is to fund and support research and education necessary to accelerate cures for rare neurodegenerative genetic diseases that affect children and currently have no cure. Firefly Fund UT Dell Medical School Over 30 million Americans are estimated to be living with a rare disease There are over 7000 known rare diseases Receiving a rare disease diagnosis can be a multiyear medical odyssey 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 wereRead More 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 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 accelerateRead 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 multiyear diagnostic odyssey that spanned over a dozen therapists and medical specialists.