Closing soon! Applications for the #EURORDISSummerSchool on Medicines Research and Development are closing 15 November. Apply now to attend a week of face-to-face training in Barcelona in June https://t.co/RxXwYpkLp6
DYK? @CDKL5USA was created by parents of children with #CDKL5 who saw a need for education and research. The site offers resources that can help families who are dealing with the overwhelming diagnosis: https://t.co/Ug6LbhvdEo
On #PCDH19 Day, we're supporting this part of the #raredisease family. To everyone suffering, their parents, siblings, and extended family: Your strength is an inspiration. Information, support, and resources are available through the @PCDH19Alliance: https://t.co/kX6Fl1QfRA
This is indeed very interesting @HuguenardLab! In some neurodevelopmental diseases, including #CDKL5 deficiency and #RettSyndrome, we see a deficit of GluR2. Also decreased in epilepsy. Understanding what controls the developmental shift is very useful for therapeutics 👍 https://t.co/h7JHkPP7b6
@CDKL5UK @CP_Consortium It mightn't magically change any loo into a 'changing places' loo but it certainly beats having to change on the floor! #anyportinastorm
We are obsessed with CDKL5 know we are here 💚
I’m becoming obsessed with genetic epilepsies... with $ZGNX pouring with hope. And now that $NVTS are taking gene therapy one dose higher.. $RARE project with #CDKL5 and also the formers #Dravet program becomes much more interesting..
This week with so much going on at the #WODCEurope I forgot to announce the last entry of the Impatient Series for #RareDisease patient groups: advice on how to evaluate and then track your research projects.
You will find it in the link 👇