We fight for a cure for #Dravet Syndrome, through research. @RetoDravet is our charity running team, the largest one in the world.
Joined October 2010
- Tweets 2,255
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9 Dec 2021
Our paper is out in @EpilepsiaOpen‼️
Latest treatment algorithm, emergency protocol and other updates in "Guidance on Dravet Syndrome from Infant to Adult Care: Road Map for Treatment Planning in Europe".
👉 doi.org/10.1002/epi4.12569
Thanks to all authors and experts involved🙏
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📢 Last chance! ⏳
Abstract submissions for #ESDC2026 close TOMORROW (Jan 6, 23:59 CET).
Don’t miss your chance to join the scientific program of the European Dravet Syndrome Conference!
👉 dravetconference.com
#Dravet #Research #RareDisease
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29 Dec 2025
🌍✨ European Dravet Syndrome Conference 2026!
📅 March 19–20 | Madrid
Two days to discuss advances and strategies on #Dravet syndrome and other developmental and epileptic encephalopathies (DEEs).
📌 Join the conference that shapes the future.
👉 dravetconference.com
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22 Dec 2025
🌍 European Dravet Syndrome Conference 2026
📅 March 19–20 | Madrid, Spain
Join experts & researchers to explore the future of #Dravet care and innovation.
💡 Don’t miss #ESDC2026!
👉 dravetconference.com
#RareDisease #Research #ClinicalTrials
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14 Dec 2025
📢 Deadline extended! ⏳
Submit your abstract for #ESDC2026 and join the scientific program of the European Dravet Syndrome Conference.
📅 New deadline: Jan 6, 2026
📍 Event: Mar 19–20 | Madrid
👉 dravetconference.com
#Dravet #Research #RaresDiseases
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23 Jul 2025
💜 Save the date! 🌟 European Dravet Syndrome Conference 2026, March 19-20, Madrid. Join global experts for #Dravet syndrome breakthroughs. Stay tuned at dravetconference.com 🚀 #EuropeanDravet2026 #Hope #Research
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24 Mar 2025
10 days until the European Dravet Syndrome Conference 2025 in Madrid! 🎉💜 Experts, families, and courage united against #Dravet. Big thanks to our sponsors and partners—you make it happen. 🌟 Info: dravetconference.com #DravetStrong #Conference2025
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19 Dec 2024
⏳ Time is running out! Submit your abstract for the European Dravet Syndrome Conference 2025 by 22 Dec 🌍. Join us in Madrid on 3-4 April to share your research and connect with experts worldwide. 💜🚀 #Dravet #EDSC2025 #ScienceWithImpact #Research #AbstractCall2025
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29 Jul 2024
📢 Exciting News! We’ve published a new #research study in @HeliyonJournal: “The Social and Emotional Burden of #Dravet Syndrome on Spanish Caregivers” 🧠.
👉 This highlights the significant impact on caregivers’ lives.
Read more: cell.com/heliyon/fulltext/S2… 💜
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Dravet Syndrome Foundation Spain retweeted
19 Jul 2024
Key point: Spanish PCPs are generally aware of genetic epilepsy but lack full knowledge of DS and PAGs.
doi.org/10.1002/epi4.13012
#epilepsy #ILAE #diagnosisdelay #Dravetsyndrome #patientsatisfaction #primarycare #publichealthcareresources @IlaeWeb @epilepsiaopen @WileyNeuro
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18 Jul 2024
New article out on #Dravet syndrome, highlighting the challenges and advancements in diagnosing and treating Dravet syndrome in Spain.
👉 Read the full article here: onlinelibrary.wiley.com/doi/… #DravetSyndrome #Research
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9 Jul 2024
Call to Action! 33 organizations urge the EU HTA Coordination Group to modernize the Joint Clinical Assessment (JCA) for ATMPs. Without suitable methodologies, the JCA will hinder patient access to advanced therapies. Use all clinical evidence, including real-world data. ⚕️🧬
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21 May 2024
Did you know #SCN1A mutations can lead to a spectrum of disorders, from migraines to severe epilepsy? 🧠💥 #DravetSyndrome, caused by a SCN1A mutation, causes frequent seizures, developmental delay, and more. 💔
🔬 Support research with just €1/month 👉 teaming.net/dravet
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Dravet Syndrome Foundation Spain retweeted
15 May 2024
Our next @_BSGCT PPE series talk, we have the amazing Prof Nicola Brunetti-Pierri talking on "Liver-directed gene therapy for inherited metabolic diseases" Please register below; forms.gle/SVFcxLgzQgt7pP8T6 @UCL_IfWH @GGM_ICH @GOSHCharity @lifearc1
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Dravet Syndrome Conference on 14-15 March 2024 in Madrid which was endorsed by the EPNS.
"The event was a kaleidoscope of knowledge, collaboration, and hope"
Report: epns.info/past-epns-endorsed…
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Dravet Syndrome Foundation Spain retweeted
¡Únete el 19 de mayo a la carrera por el síndrome de Dravet!
En el siguiente enlace podrás consultar toda la información 👉 dravetfoundation.eu/carrera-…
#sindromededravet #dravetsyndrome
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7 Apr 2024
🌟 Exciting news: Dravet Syndrome Research Foundation and Querer Foundation have joined forces! 🤝 This agreement boosts research and awareness for neurological diseases. Together, we make a difference. #CollaborationForHope #UnitedForResearch 🧬💜
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2 Apr 2024
#Autism reshapes life with lessons of love and kindness. 💙
This #WorldAutismDay, let's strive for equality and celebrate diversity. 🌍
Listen, learn, and embrace inclusivity. 💜
#Inclusion #Diversity #Understanding
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Dravet Syndrome Foundation Spain retweeted
🗓️Lisbon, 5-7 June 2024
👉Do not miss the chance to participate in the EpiC2024 Epilepsy Conference
👉EpiC2024 will gather basic and clinical researchers to potentiate collaborations and advance studies on epilepsy and its comorbidities
👉Visit our Webpage epiepinet.imm.medicina.ulisb…
ALT Lisbon, 5-7 June 2024 EpiC2024 Epilepsy Conference Registrations are now open Visit our website for more information
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26 Mar 2024
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Dravet Syndrome Foundation Spain retweeted
26 Mar 2024
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