“Together, we can make a difference.” 💪 Stefania Dantone, founder of SCN2A Italia.
In partnership with SCN2A Germany, SCN2A Italia is creating an EU SCN2A Foundation to connect families + speed the search for effective treatments 🤝 https://t.co/Rz0xNtuexK
We are thrilled to welcome 31 new patient-led organizations into the #RareAsOne Network - a community of now nearly 100 organizations learning from one another across disease areas, centering the voices of #patients, and driving progress in #RareDisease research.
We’re excited to announce that 31 new patient-led rare disease organizations are joining our #RareAsOne Network. We look forward to connecting, collaborating + driving progress together.
Meet the grantees & learn more about our #RareDisease funding https://t.co/gUheBKh5Qz
We are thrilled to welcome 31 new patient-led organizations into the #RareAsOne Network - a global community of now nearly 100 organizations learning from one another across disease areas, centering the voices of #patients and driving forward progress in #RareDisease research.
We’re excited to announce that 31 new patient-led rare disease organizations are joining our #RareAsOne Network. We look forward to connecting, collaborating + driving progress together.
Meet the grantees & learn more about our #RareDisease funding https://t.co/gUheBKh5Qz
Another excellent session on global initiatives on PCD at the #otm2024 Dr Machogu discusses barriers for PCD diagnosis and setting up a centre in Kenya
Amazing keynote talk from @Mill_lab on new therapies for primary ciliary dyskinesia
The dream of editing the genome to prevent lifelong disease is inspiring!
PCD on the move #otm2024 Puerto Rico
Patient advocates: here's your call to action!
New @CZIScience funding opportunity for patient-led #RareDisease organizations dedicated to advancing research. Apply to be part of the #RareAsOne Network: https://t.co/lq0dg9I2R8
Are you a patient advocate for a #RareDisease?
#RareAsOne is uniting patient communities working to accelerate rare disease research. Your organization could be a part of this change—learn more about our new funding opportunity ➡️ https://t.co/lq0dg9I2R8
Unlock new opportunities in rare disease research.
New #RareAsOne RFA will support patient-led organizations driving research in channelopathies, ciliopathies or inborn errors of metabolism.
Apply now! https://t.co/pauTG85R7K
Register: Upcoming ReCode Therapeutics Webinars for primary ciliary dyskinesia patients & families. Click the link for more information. #mRNA#genes#primaryciliarydyskinesia#PCD -https://t.co/xBPdrXqGwG
We must, without equivocation, denounce antisemitism.
We must also, without equivocation, denounce Islamophobia.
To all of you hurting, I want you to know: I see you. You belong.
Virtual reality lessons offer a reassuring sense of routine and unlimited field trips for @StanfordChild patients too sick to learn in person. https://t.co/Maajohvrcl
Excited for the #NORDSummit and the chance to talk about how #patient organizations are building communities, developing #research-enabling infrastructure, and driving forward progress in #RareDiseases! Hope to see you there!
Experimenting with newer ways to image multiciliated cells @WUSTLmed. These are amazing images of cultured human tracheal cells produced by Wang Twan, a talented postdoc in the horanilab, part of the amazing WASHU cilia group.
Very excited to share our latest paper from @EMBARCnetwork - Inflammatory molecular endotypes in bronchiectasis . Led by the brilliant @hayoungcc@ATSBlueEditor
Patients can be clustered by neutrophilic and T2 inflammation and this predicts exacerbations
https://t.co/5g6SGIZVcf
@noc_film Thanks to everyone who joined us for our 2023 #ScienceInSocietyMtg! It was a great opportunity to gather + hear from patient leaders, researchers & clinicians & other stakeholders about their incredible work toward finding treatments + cures for #RareDisease