@Firefly_Fund

A nonprofit that provides crucial support for research and education necessary to accelerate cures for rare genetic diseases that affect children.

 Austin, TX
fireflyfund.org
Joined January 2017
  • Tweets387
  • Following415
  • Followers228
127Media
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. Your support is the spark that fuels our work 🥰 #ShiningALight
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Exciting development rare disease treatment: Healx developed an AI platform to repurpose drugs for rare diseases. The company which is among the first generation of companies built on an AI drug discovery engine. #RareDiseases #DrugDiscovery #AI bit.ly/40vsMNm
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Giving Tuesday is the perfect time to step forward to be part of the Firefly Fund mission. Together, we can make a real difference in the lives of rare disease patients and families. Simply visit our website and click on the DONATE button in the top right corner.
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Zevra appreciates the work of #NiemannPick advocacy groups such as the @Firefly_Fund for their dedication to improving the lives of those affected by Niemann Pick disease type C. Thank you for your unwavering support of the #NPC community. #NiemannPickAwareness
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Watch our new video - inspired by rare disease parents racing to find medicine to save their children - who, in the process, were embraced by a broader network of #RareDisease patient advocates with shared goals and dreams. youtu.be/xkL9e6dLL8A

Firefly Fund: Ending the Diagnostic Odyssey for Rare Disease Patients

Watch our new video capturing the spirit of our mission - inspired ...

youtube.com
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Firefly Fund retweeted
FOX 7 Austin
@fox7austin7 Oct 2024
Two Austin sisters are hopeful after the FDA recently approved two new treatments for their rare genetic disorder, Niemann-Pick disease, type C (NPC). fox7austin.com/news/fda-appr…

Austin family optimistic for sisters with rare genetic disorder after FDA approves new drugs

Two Austin sisters are hopeful after the FDA recently approved two new treatments for their rare genetic disorder, Niemann-Pick disease, type C (NPC).

fox7austin.com
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Austin-based @IntraBio gets an FDA approval. Here's how it could help a local family @Firefly_Fund @statesman statesman.com/story/news/hea…

Austin's IntraBio gets FDA approval for Niemann-Pick Type C1 treatment. What to know.

Austin sisters, whose parents started Firefly Fund, could benefit as two new treatments come online after years of having nothing

statesman.com
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Spotify: open.spotify.com/episode/50t… Apple: podcasts.apple.com/us/podcas… Austin Next Website: austinnextpodcast.com/can-au…
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What does the future of medicine look like when every disease is thought of as rare? How does that change our scientific approach? What about our business models?
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Can Austin Lead the Race to Solving Rare Diseases? In a word, Yes! It just takes people who won't take No for an answer. 🧬@Firefly_Fund's Origin 🤘 @UTAustin @DellMedSchool Rare Disease Cent 💡Tech & Health & Business Models ❤️‍🩹ATX's Future in Saving Lives Links⬇️
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Today is the last day of Newborn Screening Awareness Month! @Firefly_Fund advances efforts to add rare diseases to newborn screening lists at state and federal levels. With your help, we can make a difference! #newbornscreening #pregnancy #NewbornScreeningAwarenessMonth
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Last night was a terrific success! We thank our supporters for making our Firefly Dreams benefit a reality.
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Next week (9/26) we host Firefly Dreams – a benefit in support of rare disease research and education. RSVP to join the guest list forms.gle/AWrLGHWkuufYQq9g7 Enjoy food, drinks, and live music performances by Monte Warden and Eddie Ray Band! @montewarden @eddie_ray_band
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Join us next Thursday 9/26 at The Headliners Club for Firefly Dreams ✨ featuring exceptional music performances by Monte Warden @MonteWarden1 and Eddie Ray Band! RSVP only forms.gle/AWrLGHWkuufYQq9g7
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Join us 9/26 for Firefly Dreams: A Benefit to Support Rare Disease Research & Education and hear the joyful sounds of Monte Warden, two-time member of The Texas Music Hall of Fame! The artist will perform and hold a meet & greet. RSVP forms.gle/AWrLGHWkuufYQq9g7
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Firefly Dreams: A Benefit to Support Rare Disease Research & Education RSVP required forms.gle/WxDvJZSRSoAHf2Xs7 September 26, 2024 5 - 7pm The Headliner’s Club 221 West 6th Street Austin, TX Special Guests Monte Warden Eddie Ray Band Hors d'oeuvres, Refreshments & Cocktails
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WE DID IT! THANK YOU! The Firefly Fund July Match Campaign was a big success! Thanks for joining the flight! #fireflyfund #jointheflight We accept donations year-round! tinyurl.com/DonateToFireflyF…
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Together, we can help children with #RareGeneticDiseases Today is your FINAL DAY to donate and DOUBLE YOUR IMPACT – All donation's matched in July! Every dollar raised goes to education and research for young rare disease patients. Donate tinyurl.com/5dsras27
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Only 2 DAYS LEFT TO DONATE and help make a life-altering difference in the lives of children with #RareGeneticDiseases. Every donated dollar will be matched this month, DOUBLE YOUR IMPACT before July 31st. Click to donate: tinyurl.com/5dsras27 #fireflyfund #jointheflight
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Just A FEW DAYS left to DOUBLE YOUR IMPACT and donate during our July Match Campaign. Every dollar counts, providing hope for families affected by a life-altering diagnosis. Click to donate: tinyurl.com/5dsras27 #fireflyfund #jointheflight #RareGeneticDiseases
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