FDA, NIH Cancel Rare Disease Day Event in Washington Amid Political Turmoil rarediseaseadvisor.com/news/…
21 FEB: The RAPID Patients’ Day (ARPA-H-SN-25-127) event is now CANCELLED. The RAPID team will post a video and other information when possible. Questions sent to [email protected] will be answered as soon as the RAPID team is able to respond.
Terry Jo Bichell retweeted
I felt so inspired writing this story about @TJBichell, who became a neuroscientist in her 50s because of her son's rare condition. My latest for @Nature:
nature.com/articles/d41586-0…
Terry Jo Bichell retweeted
Evaluation of the feasibility, diagnostic yield, and clinical utility of rapid genome sequencing in infantile epilepsy (Gene-STEPS): an international, multicentre, pilot cohort study dlvr.it/SttTbD
Terry Jo Bichell retweeted
We’re using the power of partnership to collect biospecimens across rare neurodevelopmental disorders! Learn more about the @combinedbrain Biorepository Roadshow and our partnership here: bit.ly/3rrd0VJ #scn2a
Terry Jo Bichell retweeted
Pearls & Oy-sters: Whole Genome Sequencing in Critically Ill Neurologic Patient Leads to Diagnosis with Treatment Implications dlvr.it/SsLPtK
Terry Jo Bichell retweeted
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New pre-print research from the team on #CDKL5 deficiency disorder (#CDD) & potential cardiovascular involvement! Using natural language processing, our team around @AlinaIvaniuk @team identified tachycardia as a significant association with CDD (OR 4.2). Interpretation is…
Very excited about this seminar open to the public and jointly sponsored by @combined_brain and 2 Vanderbilt departments. Please come to the talk and stay for the reception. @n_lorem #ASO #rare #cure I really think this is the wave of the future.
Make a human chain from Children's Hosp to state capitol Tues 5pm. @voices4saferTN safertn.org/events/#register
I am so proud to be from #Nashville. Our Councilmembers saved the day. Now, let's get #guncontrol. Council reappoints, Jones retakes oath of office tennessean.com/story/news/po… via @tennessean
Thank you to my Councilmember, @angienashville, for pledging to put @brotherjones_ back into the seat he was elected for. It is time for #guncontrol, thank you to the #TennesseeThree tennessean.com/story/news/po…
“We called for you all to ban assault weapons, and you respond with an assault on democracy. That is why the nation is watching...” Jones said. Speaker Cameron Sexton wants to keep his guns and get rid of the uppity blacks who speak for all of us. @brotherjones_ @JustinPearsonIJ
Terry Jo Bichell retweeted
Tennessee Democrats demand release of five young children removed from Black family from Georgia after a traffic stop in rural Tennessee.
The THP on Thursday also denied our request for body- and dash-cam footage of the stop.
tennesseelookout.com/2023/03… @TNLookout
Terry Jo Bichell retweeted
Days after Mila Jackson’s birth, her mother took Mila and her two brothers on what should have been a routine visit to the pediatrician. Instead, baby Mila was ripped away from her parents' loving care by Dallas CPS, and her father was arrested. 🧵
Honored to speak @EpilepsyFdn Research Roundtable is support of decentralized trials. @combined_brain
Zachariah Malachai performs "Girl Like You" wsmv.com/video/2023/03/08/za… with @eddieslide and the Nashville Counts
Last not least, presented by Kim Goodspeed @UTSWNews who uses #icd10 codes every day treating #raredisease patients. @AANmember @AmerAcadPeds , watch out for @SLC6A1_Mom of @combined_brain who will tell you why kids like hers need @cdc granting a unique code to speed treatments
Now @curestxbp1 presented by @IngoHelbig . Please, @CDCgov what stops you from adding #icd10 codes for genetic disorders? Code for #AngelmanSyndrome found >3500 patients in 3yrs by @AmbitCare claims analysis. Rare codes help @combined_brain disorders. @AANmember @AmerAcadPeds


















