Now stxbp1 presented by Ingo Helbig . Please, CDC 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 COMBINEDBrain disorders. American Academy of Neurology American Academy of Pediatrics

Last not least, presented by Kim Goodspeed @UTSWNews who uses #icd10 codes every day treating #raredisease patients. American Academy of Neurology American Academy of Pediatrics , watch out for @SLC6A1_Mom of COMBINEDBrain who will tell you why kids like hers need This is not the CDC granting a unique code to speed treatments

Zachariah Malachai performs "Girl Like You" wsmv.com/video/2023/03/… with Eddie Slide and the Nashville Counts

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/2023/03/16/ten… Tennessee Lookout || tnlookout.bsky.social

Honored to speak ⁦Epilepsy Foundation of America⁩ Research Roundtable is support of decentralized trials. ⁦COMBINEDBrain⁩

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. 🧵

“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. Rep. Justin Jones Justin Pearson

Thank you to my Councilmember, Angie E. Henderson, for pledging to put Rep. Justin Jones back into the seat he was elected for. It is time for #guncontrol, thank you to the #TennesseeThree tennessean.com/story/news/pol…

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/pol… via @tennessean

Make a human chain from Children's Hosp to state capitol Tues 5pm. Voices for a Safer Tennessee safertn.org/events/#regist…

Very excited about this seminar open to the public and jointly sponsored by COMBINEDBrain and 2 Vanderbilt departments. Please come to the talk and stay for the reception. n-Lorem Foundation #ASO #rare #cure I really think this is the wave of the future.

1/2 New pre-print research from the team on #CDKL5 deficiency disorder (#CDD) & potential cardiovascular involvement! Using natural language processing, our team around Alina Ivaniuk 🇺🇦 @team identified tachycardia as a significant association with CDD (OR 4.2). Interpretation is…

Pearls & Oy-sters: Whole Genome Sequencing in Critically Ill Neurologic Patient Leads to Diagnosis with Treatment Implications dlvr.it/SsLPtK

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

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

I'm going to post this video every day until the election

I felt so inspired writing this story about Terry Jo Bichell, who became a neuroscientist in her 50s because of her son's rare condition. My latest for nature: nature.com/articles/d4158…

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.

The IDDRC RFA's have just been cancelled. This is war on people with intellectual disabilities.

FDA, NIH Cancel Rare Disease Day Event in Washington Amid Political Turmoil rarediseaseadvisor.com/news/amid-poli…