Top Tweets for #RareasOne
Lex Cowsert Ph.D. CSO & Mary Makley, Executive Director, are in Boston w/@GlobalGenes Rare Drug Dev Symposium. If you're here, find us! If not, we'll share learnings soon. Looking forward to tomorrow's pitch session and being with our #RareasOne Cohort again! #rdds26 #raredisease
The #RareAsOne Cycle 2 Impact Report is here! 🎉
Patient communities are reshaping the rare disease landscape—engaging 6,000+ researchers, launching 13 registries, and driving 150+ research projects.
Explore their impact: https://t.co/Orft04UzWg
TESS received the green light from the FDA to start a gene therapy trial for #SLC13A5Epilepsy! This is the first ever medication that addresses the underlying cause of the disorder. 🙌
Read more: https://t.co/7DyemNZWV3
4,000 drugs. 18,000 diseases. Millions of possibilities.
AI is scanning the world’s knowledge of medicines to uncover cures-faster, cheaper, smarter than new drug development. We’re proud to support @DavidFajgenbaum & this work through #RareAsOne
More: https://t.co/bg4d0mHFZ2
"Patients have unique insights and an unparalleled sense of urgency that no other stakeholders can match."
Refusing to accept "no cure" as an answer, Kasey Woleben founded the Cure Mito Foundation to fight for the lives of those impacted by Leigh Syndromel.
#RareAsOne
Thank you @nicupodcast!
Listen to @GYeretssian's episode & register to join us in Chicago https://t.co/2NDQjouBSp
#preventNEC #RareAsOne @cziscience @jenncanvasser @neojae @CincyChildrens @mistygoodlab @uncchildrens @ChanZuckerberg @magnesslab @troymarkelmd @crmartin90 @AmyHairMD
🎙️ We're thrilled to welcome Garabet Yeretssian to The Incubator Podcast for a discussion about NEC awareness in collaboration with @NECSociety!
💡 Garabet Yeretssian is a scientific innovator bridging biotech, academia, and non-profits with enthusiasm. His work at the Chan Zuckerberg Initiative focuses on technologies for understanding cellular behavior in metabolism and immunity, while improving patient care through meaningful partnerships worldwide.
🔗 Listen to the conversation here: https://t.co/TYDd1MNw0N
@NECSociety #NECSymposium #NECSociety #NeonatalCare #TheIncubatorPodcast
When no treatment existed for his #RareDisease, @DavidFajgenbaum found one himself—an existing drug hiding in plain sight.
Now, through his nonprofit @EveryCure he’s helping uncover new uses for existing medicines. We’re proud to support his work through our #RareAsOne Network.
We're leaving the #RareAsOne Network 2025 Meeting energized by powerful conversations + new connections! Participants shared examples of patient-led #RareDisease collaborations that are moving us closer to treatments and cures across diseases. Thanks to all who joined! #Patients
📍Dr. Rushing is representing the CSNK2A1 Foundation at the CZI Science in Society: Rare As One Network 2025 meeting this week!
Grateful to join fellow #RareDisease leaders to advance community-led research in OCNDS. 💚🧬
#ScienceInSociety #RAONetwork #CZI #RareAsOne
@TIME @cshperspectives .@DavidFajgenbaum nearly died from a #RareDisease—then founded @EveryCure to find new uses for FDA-approved drugs using AI. His team has already identified 100+ promising treatments hiding in plain sight. #RareAsOne
https://t.co/3fUqU3dNOP
"Patient-driven research is essential for adrenoleukodystrophy because it ensures studies focus on the real-world unmet needs and experiences of those affected." Kelly Miettunen + ALD Connect are ensuring the translation of scientific advances into better care. #RareAsOne
Around 1 in 15,000 babies in the UK will be born with Dravet Syndrome. @DravetUK is dedicated to improving the lives of people affected by Dravet by building a research network & driving collaboration between scientists, clinicians, patients + patient advocates. #RareAsOne
"Our work is a labor of love and hope: we want better treatment options so that all our children have the chance to live, grow, and thrive.”
Heterotaxy Connection fosters collaboration between scientists & families, aiming to close the gaps in heterotaxy research #RareAsOne
"Patients have unique insights and an unparalleled sense of urgency that no other stakeholders can match."
Refusing to accept "no cure" as an answer, Kasey Woleben founded the Cure Mito Foundation to fight for the lives of those impacted by Leigh Syndromel. #RareAsOne
We're so thrilled to work with so many amazing patients and organizations in the rare disease community!
#RareAsOne #RareDiseaseDay
Hope is ineffective without action.”
Kristen Wheeden + the @UnitedPorphAssc are driving #RareDisease research that leads to faster diagnosis and better treatments for those with #Porphyria. #RareDiseaseMonth #RareAsOne
Hope is ineffective without action.”
Kristen Wheeden + the @UnitedPorphAssc are driving #RareDisease research that leads to faster diagnosis and better treatments for those with #Porphyria. #RareDiseaseMonth #RareAsOne
"Our research priorities are driven by the voices and needs of our community."
After being diagnosed with Adult Refsum, a condition affecting vision, hearing & mobility, Kristie DeMarco started @GlobalDAREFound
#RareDisease #RareAsOne #RareDiseaseMonth
What the @ChanZuckerberg has made possible for the APBD community and our peer patient-led rare disease organizations with its Rare As One (RAO) program is transformational and inspiring.
#RareAsOne #rare #APBD #impact #raredisease #research
If anyone asks me: "Where do you see yourself in the next five years?"
My answer will be: working with the support of @ChanZuckerberg 🙋♀️ on patient-led project towards clinical research readiness
#rareasone #rarediseases #hrabrisa #lilbraveone #neurotransmitter
With the inclusion of international groups like Dravet Syndrome UK, #RareAsOne is going global! We’re excited to work together to push research + advocacy forward for #RareDiseases. Learn more: https://t.co/Rz0xNtuexK
Last Seen Hashtags on Sotwe
Trends for you
Most Popular Users
Elon Musk 
@elonmusk
241.6M followers
Barack Obama
@barackobama
119M followers
Cristiano Ronaldo
@cristiano
114.2M followers
Donald J. Trump
@realdonaldtrump
111.8M followers
Narendra Modi
@narendramodi
107.2M followers
Rihanna
@rihanna
98.7M followers
NASA
@nasa
92.4M followers
Justin Bieber
@justinbieber
91.8M followers
KATY PERRY
@katyperry
89.9M followers
Taylor Swift
@taylorswift13
83.8M followers
Lady Gaga
@ladygaga
75.3M followers
Virat Kohli
@imvkohli
73.2M followers
Kim Kardashian
@kimkardashian
70.8M followers
YouTube
@youtube
68.8M followers
Neymar Jr
@neymarjr
66.2M followers
Bill Gates
@billgates
65M followers
Selena Gomez
@selenagomez
63M followers
The Ellen Show
@theellenshow
62.3M followers
CNN
@cnn
61.8M followers
X
@x
60.7M followers