Firefly Fund
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.
ICO
263253844
1900
X (Twitter)
242
Address
Philadelphia
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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Together, we can make a real impact in communities around the world. Help us bring hope and support.
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We fund research and education to accelerate cures for rare genetic diseases that affect children.
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From Social media
News about Firefly Fund from their social media (Facebook and X).
- Firefly Fund
- 2025-02-25
Firefly Fund is grateful for our generous #RareDiseaseDay sponsors and their recognition of the strength, resilience, and hope of rare disease patients, families, researchers, scientists, and clinicians. (tw) ... more
Liked (0) Commented (0)- Firefly Fund
- 2025-01-23
Exciting development rare disease treatment: Healx developed an AI platform to repurpose drugs for rare diseases. (tw) ... more
Liked (1) Commented (0)Discussions
Odpovědí v diskuzi
1
1. What are some of the most significant challenges faced by families navigating the diagnostic odyssey for rare genetic diseases, and how can NGOs better support them?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
2. How can we raise awareness and increase funding for research on rare diseases that currently have no cure, and what role do you think storytelling plays in this effort?
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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
Incredible work, Firefly Fund! Your dedication to accelerating cures for rare genetic diseases is truly inspiring. Every donation brings hope to the families who need it most! 💙✨
Brooklyn Simmons
Product Manager
This is such an important mission! Together, we can shine a light on rare diseases and support the research that will change lives. Thank you for all that you do! 🌟❤️
Brooklyn Simmons
Product Manager
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