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.
kif1a.org/blog/a-new-type-of…
Thank you for your work @WormlockHolmes!
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!
Dominique Lessard, PhD retweeted
Today on #RareDiseaseDay we want to celebrate a snapshot of the progress that KIF1A.ORG and the KAND community have made: This year the KIF1A Research Network grew from 130 to over 160 members!
Dominique Lessard, PhD retweeted
We are proud to join landmarks around the world in illuminating our offices for #RareDiseaseDay—showing rare disease patients they aren’t alone ❤️💚💙💜
#LightUpForRare
Dominique Lessard, PhD retweeted
Treatment and a cure for KAND can’t wait. Donate to our #GivingTuesday fundraiser TODAY! #WeCanCureKAND
facebook.com/donate/22556391…
Dominique Lessard, PhD retweeted
Save the Date: KIF1A.ORG 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
surveymonkey.com/r/2023KANDC…
Dominique Lessard, PhD retweeted
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: bit.ly/3FOUs38
Dominique Lessard, PhD retweeted
📢#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
kif1a.org/blog/kif1a-org-ini…
Dominique Lessard, PhD retweeted
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!
bonfire.com/rare-and-relentl…
Dominique Lessard, PhD retweeted
.@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 czi.co/AncestryNetworks
Dominique Lessard, PhD retweeted
It’s International Day of #WomenInScience! At KIF1A.ORG, 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 KIF1A.ORG to find better care & treatments for KAND.
Dominique Lessard, PhD retweeted
Join our information session on Wednesday, February 16, for more details about these two RFAs to advance #RareDisease research. Learn more and register app.smartsheet.com/b/form/c3…
*THIS* is how you do it!!! 👏👏👏
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 bit.ly/3ASTYIv
Dominique Lessard, PhD retweeted
🎉 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
“AAAS is proud to honor these individuals who represent the kind of forward thinking the scientific enterprise needs, while also inspiring hope for what can be achieved in the future,” – @sudipsparikh, AAAS CEO, on the election of the 2021 AAAS Fellows. fcld.ly/2021aaasfellownews

















