Top Tweets for #Inchstone
This week weโre bringing you some #NewWords related to parenthood:
#TeenTernityLeave ๐งโ๐ผ๐
#NepoParent ๐ชโจ๐จโ๐ค
#Inchstone ๐ฅน๐ค๐
Can you guess what they mean from our emoji clues?
Find out on the blog โฌ๏ธ
https://t.co/aQwZNQqeL6
#CambridgeDictionary https://t.co/OX1ElAftWE
Another first and another huge #inchstone @NlySocial - this Instagram Reel just hit One Million Views! #socialmediamanager
It was an honor to pilot the
#Inchstone Project with @DEE_Pconnection and 10of our #SCN2A families! As the findings are being published the results can further help all DEE groups w/ endpoint measurements for their clinical trials. #bettertogether #rareasone #SCN8A
What Does Better Look Like? Our Inchstone Project
partnered with @FamilieSCN2A to ask what meaningful changes demonstrate improved quality of life & to document what matters to those with severe DEEs and their families. https://t.co/loedzwCvXq
Thanks to the #SCN2A families!
Thank you to Anne Berg and @natashanludwig for presenting at the #SCN2Aconference on measuring meaningful change in our profoundly affected #SCN2A community. They presented data from the CTRS and @DEE_Pconnection #Inchstone Project!
#MoreThanSeizures
Excited to share our #SCN2A Clinical Trial Readiness Study and the pilot #Inchstone project with @DEE_Pconnection
@natashanludwig @greatcait @CureSCN2A
The theme for #GatlinburgCon 2023 is Rare Genetic/Monogenic Disorders & Co-Occurring Conditions in Intellectual and Developmental Disabilities. #SCN2A is #MoreThanSeizures and we are excited to spread the word #Inchstones
public & #patient #engagement =essential to the present & future of #research. We are pushing forward in #epilepsy together. Thanks @PCORI & @LGS_Foundation @DEE_Pconnection @PESAlliance for showing the #power of #partnership #inchstone #data @PedsEpilepsyDoc @LurieNeurosurg
We are so excited to be doing this work to make sure every #inchstone gets measured! #CountEveryInchstone
Thank you to the participating patients, families and the amazing team at @DEE_Pconnection for ensuring the most severely affected patients are not excluded from clinical trials because โit is hard to measure improvement.โ
#CureSCN2A
#SCN2A
RT @mumdoingherbest: We were told to brace for my daughter never to sit or crawl last year. She is globally delayed and still has a lot wrong with her but Iโm so so proud of these 5 steps I never thought Iโd ever see this day!!!!! #parenting #inchstone #โฆ https://t.co/MRZWO4FmDm
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