We are the Patient Advocates, the ePAG (European Patient Advocacy Group) for @EpiCARE_ERN! #RareEpilepsies #Epilepsy #Neurology
EU
Joined June 2020
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ePAG Epicare retweeted
Our June Rare Epilepsy ROUND UP newsletter is out. Check out all things Rare Epilepsy...
shoutout.wix.com/so/7bNb7eOS…
Research into the #rareepilepsy #Ring20 - published in @epilepsyaction’s “Epilepsy Today” by our Deputy Coordinator & Co-Chair: Allison Watson, also CEO of @Ring20UK.
#epilepsy
Rare diseases aren’t rare. They don’t “only” impact the 30million people in Europe that have one, but also their friends and families.
Tell Ursula @vonderleyen, President of the @EuropeanCommiss why Europe should act! ⤵️
action.eurordis.org/rare2030… #RareDisease #epilepsy #neurology
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ePAG Epicare retweeted
How inspiring! Ronan O'Lenskie underwent surgery to remove a brain tumour due to TSC-related epilepsy. Now Ronan is helping others in the TSC community, by shaving his head to raise funds and improve lives. Support for Ronan's bravery and courage here: bit.ly/2RJ46BH
ePAG Epicare retweeted
"Want to find out more about r(20) epilepsy? We have all the information you need at ring20researchsupport.co.uk/… #NationalEpilepsyWeek #PatientAdvocacy #Ring20
Don't forget to Like & Share! 😀"
See the interview with neuroscientist @MamadOmar5 who is researching the #rareepilepsy #CDKL5. ⬇️
#epilepsy #EpilepsyWeek
Today’s the day… We end National #EpilepsyWeek with a bang!
youtu.be/kXTXn1rWtBw
Watch my vid with neuroscientist & Research Fellow Dr @MamadOmar5 who studies one of the most common genetic epilepsies: #CDKL5 Deficiency Disorder (CDD)!
youtu.be/kXTXn1rWtBw #epilepsy
ePAG Epicare retweeted
GETA 2021 SPEAKER PROFILE:
@mattmight
Title: The Algorithm for Precision Medicine
#GETA2021 #mattmight #precisionmedicine
Hear about research into the rare epilepsy #CDKL5 at @Futureneuro_ie @RCSI_Irl with Dr. @MamadOmar5! ⤵️
Today’s the day… We end National #EpilepsyWeek with a bang!
youtu.be/kXTXn1rWtBw
Watch my vid with neuroscientist & Research Fellow Dr @MamadOmar5 who studies one of the most common genetic epilepsies: #CDKL5 Deficiency Disorder (CDD)!
youtu.be/kXTXn1rWtBw #epilepsy
Epilepsy research and specifically the #genetic epilepsies require more attention in research. Hear lead geneticist & Deputy Director Gianpiero Cavalleri at @Futureneuro_ie chat with @TorieRobinson10 from our ePAG! ⤵️
#RareDisease #epilepsy #rareepilepsy
𝗬𝗼𝘂. 𝗠𝗲, & 𝗘𝗽𝗶𝗹𝗲𝗽𝘀𝘆 FutureNeuro & @EpilepsySparks have teamed up this week to highlight all things #epilepsyawareness. Check out our video with @TorieRobinson & our Deputy Director: Gianpiero Cavalleri! ⬇️
youtu.be/A5i9PJ0x_Lo
#epilepsyweek #AdvocateForEpilepsy
ePAG Epicare retweeted
A promising laser therapy for children with drug-resistant epilepsy.
Find all the information on our blog👇
tinyurl.com/zmyh4mwm
ePAG Epicare retweeted
🚨Anunciamos los premiados🚨
Nos complace anunciar a los seleccionados de nuestra Convocatoria 2020 de Proyectos de Investigación Innovadora en Terapias Avanzadas para el Síndrome Dravet.
Conoce los proyectos de Rubén Hernández y Massimo Mantegazza👇
lnkd.in/dBsmjcW
ePAG Epicare retweeted
Sleep can impact a child's wellbeing, behaviour and even their TSC. Our next FREE virtual event looks at the importance of sleep in children with TSC, with leading sleep and TSC experts discussing these key topics and answering your important questions:
tuberous-sclerosis.org/event…
ePAG Epicare retweeted
Great and amazing news for CDKL5 project in RCSI. The first CDKL5 model has just arrived today from USA @FutureNeuro @RCSI_Irl @ITA_CDKL5_IVLC @CDKL5Alliance @CDKL5USA @CDKL5AdvocacyM @cdkl5spain @CDKL5Cad @Cdkl5ireland @CDKL5UK. Time for discovery 😁
ePAG Epicare retweeted
Thank you so much @TorieRobinson10 for bringing the voice to @Prof_DCHenshall, @RCSI_Irl @ITA_CDKL5_IVLC @CDKL5AdvocacyM @CDKL5USA @CDKL5Alliance @CDKL5UK @Cdkl5ireland , looking forward, :)
An intro to the interview with Dr. @MamadOmar5, #epilepsy (#CDKL5) researcher from Royal College of Surgeons in Ireland, FutureNeuro, Ireland! Out on my @YouTube page next week, #NationalEpilepsyWeek!
facebook.com/torierobinson10… @RCSI_Irl
ePAG Epicare retweeted
Fundación Síndrome de Dravet en #SENEP2021. ¿Qué hemos aprendido?
Te lo contamos todo en 👇
tinyurl.com/mdz8ybkw
Gracias a @senep_es por la excelente organización de esta reunión y por dar voz a tantas familias y pacientes #Dravet que forman parte de nuestra Fundación.
ePAG Epicare retweeted
🚨CARTEL OFICIAL DEL DÍA INTERNACIONAL DEL SÍNDROME DE DRAVET 2021🚨
Se va acercando el gran día. ¿Te gusta el cartel?😊👏
➡¡Únete a la lucha contra el #Dravet a través del #DíaInternacionaldelSíndromedeDravet y comparte el cartel de esta edición!
Más👉tinyurl.com/a8d7uxtc
ePAG Epicare retweeted
🚨OFFICIAL POSTER OF THE INTERNATIONAL DRAVET SYNDROME DAY 2021🚨
The big day is getting closer. Do you like the poster?
😊👏
Join the fight against #Dravet through the #InternationalDravetSyndromeDay and share this year's poster!
More 👉thttps://tinyurl.com/a8d7uxtc
ePAG Epicare retweeted
Nueva reunión del Grupo Europeo de Trabajo en Terapias Avanzadas para el Síndrome de Dravet
🇪🇺🧬💜
¿Quieres saber qué novedades trajo? 👇
dravetfoundation.eu/nueva-re…
ePAG Epicare retweeted
New meeting of the European Working Group on Advanced Therapies for Dravet Syndrome 🇪🇺🧬💜
Do you want to know what's new? 👇
dravetfoundation.eu/nueva-re…
