Andrews Firefly Fund

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A nonprofit that provides crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children. We fund research and education to accelerate cures for rare genetic diseases that affect children. Our mission is to fund and support the research and education necessary to accelerate cures for rare neurodegenerative genetic diseases that affect children and currently have no cure.

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813737330

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AUSTIN

Address: P.O. Box 92616, AUSTINWeb: Sign in to see organisation websiteFacebook: FireflyFundX (Twitter): Firefly_FundRevenue: 55210ICO: 813737330

Shining a Light on Rare Disease - Firefly Fund 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.

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Clara

1. What innovative fundraising strategies have NGOs successfully used to support rare disease research and how can these be adapted for the Firefly Fund?

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Sharon

Every contribution counts! Let’s come together to support the research and education needed for rare genetic diseases. Together, we can bring hope and healing to so many families! πŸ’ͺ✨

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Lucy

So grateful for organizations like the Firefly Fund! Your work is truly inspiring and makes a real difference in the lives of children and families facing rare diseases. πŸŒŸπŸ’–

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James

2. How can we increase awareness about the challenges faced by families navigating the lengthy diagnostic odyssey for rare genetic diseases, and what role can NGOs play in this effort?

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