The TBCK Foundation proudly advocates, educates, and advances research for the rare genetic neurological disease, TBCK syndrome. #dontstopbelievin #tbckwarrior
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Joined February 2019
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Check it out! Dr. Xilma sharing about TBCK Syndrome. Thanks to Child Neurology Society for raising awareness for such an important month. 🦓 🧬
Have you heard about TBCK syndrome? Check out this excellent video for #RareDiseaseMonth by Dr. Xilma Ortiz-Gonzalez to learn more.
@drxilma @tbckfoundation @ChildrensPhila
we are so fortunate to have this incredible crew of researchers!
@tbckfoundation researchers @drxilma @gbdownes @rifferolls @DemilyDurham @AbdiasRosado1 @EmilyLubin_ What an amazing group!
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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/20…
Wahoo! It’s TBCK Weekend!
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/conferenc… @tbckfoundation
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!
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/MDBR2021AWARDEES bit.ly/MDBR2021AWARDEES
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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
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/RareAsOneNetwork
A month away from The TBCK Virtual + Mini Conference! Register here: tbckfoundation.com/conferenc…
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