Patient voices belong in every step of the scientific method. It starts with a call to action.
🗣️📣Dear scientists: it's our responsibility to create a system for these voices to be heard. Click below for a debrief on one way we can make this possible in the rare disease space.
How can we place patient voices at the center of scientific discovery? Let’s start where seeds of scientific discovery are planted: the classroom. Learn more about our experience bringing KAND families and students together in the blog post below.
https://t.co/BOIwvU8Uum
An inspiring group of parents+caregivers who also deeply engage with science (organize researchers round tables, attend science webinars, summarize @biorxivpreprint+papers). They covered our recent work, hope it adds to understanding roles of KIF1A & thus KAND. @KIF1A@DVLessard
We are excited to announce our new partnership with @VibeBio! We have joined forces to tackle our understanding of the KIF1A interactome, which will be used to inform KAND therapeutic development. Watch our CSO @DVLessard walk us through this new initiative!
Today on #RareDiseaseDay we want to celebrate a snapshot of the progress that https://t.co/9vfCzWLXGE and the KAND community have made: This year the KIF1A Research Network grew from 130 to over 160 members!
We are proud to join landmarks around the world in illuminating our offices for #RareDiseaseDay—showing rare disease patients they aren’t alone ❤️💚💙💜
#LightUpForRare
Save the Date: https://t.co/9vfCzWLXGE is thrilled to host the next in-person KAND Family & Scientific Engagement Conference in NYC on August 3-6, 2023!
Are you interested in joining us? Send in this short survey! #KIF1A
https://t.co/5i7ECGo2gq
Representation matters in the classroom and at the lab bench.
@cziscience’s new program will support scientists who are advancing #DiversityInSTEM through their research and by mentoring tomorrow’s scientists: https://t.co/weRkT4N3ee
📢#RareDiseaseDay announcement: Learn about the KOALA Study & how we're expanding our partnership with the Chung Lab to boost clinical trial readiness & create more opportunities for KAND families to play an active role in research & discovery. #KIF1A
https://t.co/eMsb9SjmTz
If you're rare, you're relentless. Celebrate #RareDiseaseDay coming up on February 28th and the relentless spirit of the #RareDisease community by snagging one of these rare and relentless tees!
https://t.co/nH4Knn5tNw
.@cziscience’s Ancestry Networks brings together
🤝 16 teams
🔍 120 investigators
��� 31 countries
to make research more representative of populations that are excluded in biomedical science https://t.co/4VxXSlIlOF
It’s International Day of #WomenInScience! At https://t.co/9vfCzWLXGE, we're proud of the incredibly talented women scientists in the KIF1A Research Network. Here are just a few of the brilliant women working with https://t.co/9vfCzWLXGE to find better care & treatments for KAND.
Join our information session on Wednesday, February 16, for more details about these two RFAs to advance #RareDisease research. Learn more and register https://t.co/FWnir6VfjV
At @ChanZuckerberg, we believe that science is better when patients are equal partners in research, so we’re launching two new RFAs centering patient-partnered collaboration 🧵 #RareDiseaseMonth https://t.co/36swiqSZTJ
🎉 Congrats to @ChanZuckerberg’s Tania Simoncelli! @TaniaSimoncelli was named a 2021 @AAAS Fellow for her remarkable contributions to developing strategies and policies for improving the public value of science