Give kids suffering from UBA5 disease a chance to live a healthy life.
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🎧 Tune in to our podcast episode sharing Raiden's journey. Produced by @UMassChan, Real Diseases, Real Stories highlights families changing the world of rare diseases.
Listen to our episode & more here: umassmed.edu/rarediseasesrea…
#RareDiseases #UBA5 #RareDiseasesRealStories
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We’re proud to welcome Chris Andon as our Executive Director.
Chris has been part of Raiden’s journey since before RSF existed and has been instrumental in advancing our mission. In this role, he’ll help lead our UBA5 gene therapy program toward the clinic.
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We’re excited to welcome Dr. Brandon Henry as Chief Drug Development Officer of the Raiden Science Foundation.
Dr. Henry is helping lead our next stage of UBA5 gene therapy development. We’re incredibly lucky to have him on this journey.
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We’re excited to introduce Aurelix Bio, a key part of the team helping move our UBA5 gene therapy toward the clinic.
Their expertise in drug development and regulatory strategy is helping us navigate this next stage.
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Excited to share that the Raiden Science Foundation has partnered with Citizen Health to bring new AI powered tools and resources to the UBA5 community.
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We have some exciting updates to share this month! From research and new team members to partnerships and fundraising, there’s a lot happening at the Raiden Science Foundation.
Stay tuned!
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Five years ago today, Raiden was diagnosed with UBA5 disorder. It was the day that changed everything and the beginning of a journey the Phams never expected.
What started with two parents searching for answers became RSF and a fight to create hope where there was none.
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Raiden Science Foundation retweeted
The Evo Collection on @humble has been extended for another week!
Thank you @ArcSystemWorksU for your continued support of the @RaidenScience. We couldn’t be more grateful. ❤️ #Fight4Rare
$100K raised and counting!
More time for more savings ⏲️
We are pleased to announce that our Evo Collection on Humble Bundle has been extended by another 7️⃣ days!
Your bundle purchase supports the Raiden Science Foundation and its Fight4Rare initiative, helping ignite hope and advance rare disease treatment and research. ✨
⬇️Get Yours Today!
bit.pulse.ly/yll8jshql0
#Fight4Rare
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Raiden Science Foundation retweeted
Guilty Gear joins the fight against RARE
💙 Ignite Hope. ❤️ Drive Cures.
A special promotion supporting #Fight4Rare begins 06.26.2026
Let's Rock @ArcSystemWorksU
#RareDisease #ArcSystemWorks #RaidenScienceFoundation
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Raiden Science Foundation retweeted
$19,242 raised to support @RaidenScience
Thank you, @humble and @CapcomUSA_ for standing with us in the fight against rare disease.
Every dollar helps fund research snd advance potential treatments ❤️
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Thank you @KGWNews for sharing our story.
kgw.com/article/news/local/b…
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Raiden Science Foundation retweeted
Today is Rare Disease Day, a reminder that “rare” can still have a big impact. At St. Jude, advancing care for rare and ultra-rare pediatric conditions, including neurological disease, is core to our mission.
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Raiden Science Foundation retweeted
Today is #RareDiseaseDay. Families of children with rare diseases are featured on @UMassChan’s six-episode Rare Diseases, Real Stories podcast. Listen: direc.to/oYux
#RareDiseasesRealStories #RareDiseases #podcast @RareDiseaseDay @RiaanResearch @RaidenScience @UMass 🎧
ALT Collage of images of the families featured in the Rare Diseases, Real Stories podcast, with text in the middle that says Rare Diseases, Real Stories Now streaming
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Today is Rare Disease Day 🦓
Thank you to @OHSUDoernbecher for inviting us to share Raiden’s story and the work we’re driving through the Raiden Science Foundation for UBA5 disorder as part of the 2026 Rare Disease Highlights Day yesterday.
#RareDiseaseDay
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Raiden Science Foundation retweeted
Researchers at St. Jude are mapping cell fate decisions, motor function wiring and disease-linked gene regulation to better understand developing neural systems and how neurologic diseases disrupt those processes. ow.ly/oKlX50Ym17F
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Happy 6th Birthday to our little inspiration! 🎉🎂
If you’d like to help make his day extra special, please take a moment to sign his birthday card. He’ll love seeing the messages and and we’ll read every single one to him.
kudoboard.com/boards/mLVaVoT…
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Raiden Science Foundation retweeted
UMass Chan and the Raiden Science Foundation have partnered on a technology license for a gene therapy product targeting the ultra-rare disease UBA5: direc.to/oUP4
The foundation is named after 5-year-old Raiden Pham, diagnosed in 2021. #RareDisease @RaidenScience
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🚨Got 2 minutes? Vote for us in this year's Project For Awesome. Voting is open until 2/18. Community votes decide which charities receive the P4A grant.
👉projectforawesome.com/videos…
#RareDisease #UBA5 #Awareness #Research #P4A2026 #community
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This is why we fight. For kids like Marko and his family.
Awareness brings support.
Support drives research.
Research brings hope.
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Grateful beyond words. Because of our community, $135K raised in December to move UBA5 gene therapy one step closer to reality. Thank you. 💙
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🎄 Looking to donate crypto this Christmas?
Consider supporting us as we work to raise $2M to fund UBA5 gene therapy—giving hope today and changing lives tomorrow.
❤️link here: thegivingblock.com/donate/ra…
#cryptoforgood #raredisease #genetherapy @givinblockdonor
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