tbckfoundation
43 posts
tbckfoundation
@tbckfoundation
The TBCK Foundation proudly advocates, educates, and advances research for the rare genetic neurological disease, TBCK syndrome. #dontstopbelievin #tbckwarrior
USA Katılım Şubat 2019
63 Takip Edilen81 Takipçiler
Check it out! Dr. Xilma sharing about TBCK Syndrome. Thanks to Child Neurology Society for raising awareness for such an important month. 🦓 🧬
Child Neurology Society@ChildNeuroSoc
Have you heard about TBCK syndrome? Check out this excellent video for #RareDiseaseMonth by Dr. Xilma Ortiz-Gonzalez to learn more. @drxilma @tbckfoundation @ChildrensPhila
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@gbdownes was recently featured on Story Collider sharing how his incredible story brought him to TBCK research. a must listen! storycollider.org/stories/2022/8…
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Wahoo! It’s TBCK Weekend!
CHOP Research@CHOP_Research
Welcome #TBCKSyndrome families, researchers & clinicians to @ChildrensPhila Research Institute! Lots of insights, updates & connections about the ultra rare disease at #tbckweekend2022. Hybrid, bilingual sessions Sat. 10/8, from 8-4 EST. tbckfoundation.org/conference2022 @tbckfoundation
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tbckfoundation retweetledi
It's nothing new that we have a new podcast every Friday but it feels like an anomaly that we haven't missed a Friday since 2014 🤯 Make sure you don't miss our new episode tomorrow with stories from Lauren Soares + @gbdownes. Available tomorrow at the link in our bio!
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Yay! Congrats to all the awardees, but especially to one of our favorite TBCK researchers @gbdownes we are so thrilled to be able to partner with @MDBRide4Rare to help support your critical TBCK research!
UPenn Million Dollar Bike Ride by ODC@MDBRide4Rare
Congrats to the 2021 #MDBR grant awardees! 37 projects were funded with $2.2M raised for 28 #rarediseases. Thank you to our MDBR community for their fundraising & commitment to the cause. See the full list of projects here: bit.ly/MDBR2021AWARDE… bit.ly/MDBR2021AWARDE…
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tbckfoundation retweetledi
The TBCK Foundation is so thrilled to announce that we are one of the new Rare As One Grantees! Thank you @ChanZuckerberg for this incredible opportunity! #rareasone
Chan Zuckerberg Initiative@ChanZuckerberg
Say hello to our new #RareAsOne grantees! 👋🏽 20 patient-led #RareDisease groups join the effort to build diverse, inclusive communities, improve diagnosis + develop shared research priorities Learn more: czi.co/RareAsOneNetwo…
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A month away from The TBCK Virtual + Mini Conference! Register here: tbckfoundation.com/conference2021
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