tbckfoundation
@tbckfoundation
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The TBCK Foundation proudly advocates, educates, and advances research for the rare genetic neurological disease, TBCK syndrome. #dontstopbelievin #tbckwarrior
USA
Joined February 2019
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
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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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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.
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RT @storycollider: 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 s….
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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!.
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:
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RT @CureCastleman: We are so grateful for the amazing collaborating rare disease organizations who shared their experience with drug repurp….
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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:
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A month away from The TBCK Virtual + Mini Conference! Register here:
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