Dravet Syndrome Foundation Spain

We fight for a cure for #Dravet Syndrome, through research. @RetoDravet is our charity running team, the largest one in the world.

[Dravet Syndrome Foundation Spain @DSFeu]

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".

👉 https://t.co/TjxyJdoSW5

Thanks to all authors and experts involved🙏

[Dravet Syndrome Foundation Spain @DSFeu]

📢 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!

👉 https://t.co/HvS6oynfmv

#Dravet #Research #RareDisease

[Dravet Syndrome Foundation Spain @DSFeu]

🌍✨ 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.
👉 https://t.co/HvS6oynfmv

[Dravet Syndrome Foundation Spain @DSFeu]

🌍 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!
👉 https://t.co/HvS6oymHwX

#RareDisease #Research #ClinicalTrials

[Dravet Syndrome Foundation Spain @DSFeu]

📢 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

👉 https://t.co/HvS6oymHwX

#Dravet #Research #RaresDiseases

[Dravet Syndrome Foundation Spain @DSFeu]

💜 Save the date! 🌟 European Dravet Syndrome Conference 2026, March 19-20, Madrid. Join global experts for #Dravet syndrome breakthroughs. Stay tuned at https://t.co/HvS6oymHwX 🚀 #EuropeanDravet2026 #Hope #Research

[Dravet Syndrome Foundation Spain @DSFeu]

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: https://t.co/xSkEq9Z3OH #DravetStrong #Conference2025

[Dravet Syndrome Foundation Spain @DSFeu]

⏳ 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

[Dravet Syndrome Foundation Spain @DSFeu]

📢 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: https://t.co/tHa6WpV6Y6 💜

[Epilepsia Open @EpilepsiaOpen]

Key point: Spanish PCPs are generally aware of genetic epilepsy but lack full knowledge of DS and PAGs.
https://t.co/ydDaDVngfi

#epilepsy #ILAE #diagnosisdelay #Dravetsyndrome #patientsatisfaction #primarycare #publichealthcareresources @IlaeWeb @epilepsiaopen @WileyNeuro

[Dravet Syndrome Foundation Spain @DSFeu]

New article out on #Dravet syndrome, highlighting the challenges and advancements in diagnosing and treating Dravet syndrome in Spain.

👉 Read the full article here: https://t.co/8GycWdyg25 #DravetSyndrome #Research

[Dravet Syndrome Foundation Spain @DSFeu]

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. ⚕️🧬

[Dravet Syndrome Foundation Spain @DSFeu]

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 👉 https://t.co/tEfUGeIS1F

[Raj Karda @Dr_RKarda]

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; https://t.co/BiwlyciR6a @UCL_IfWH @GGM_ICH @GOSHCharity @lifearc1

[EPNS @EPNSnews]

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: https://t.co/mOzvtndH7l

[Sociedad Española de Neurología Pediátrica (SENEP) @senep_es]

¡Únete el 19 de mayo a la carrera por el síndrome de Dravet!
En el siguiente enlace podrás consultar toda la información 👉 https://t.co/tZ3YX3r14u
#sindromededravet #dravetsyndrome

[Dravet Syndrome Foundation Spain @DSFeu]

🌟 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 🧬💜

[Dravet Syndrome Foundation Spain @DSFeu]

#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

[EpiEpiNet - Epileptogenesis & Epilepsy Network @EpiEpiNet]

🗓️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 https://t.co/HAuWMtfPOw

[AGE Program - Adult Genetic Epilespy @DrDaniAndrade]

Happy #PurpleDay important time to raise awareness about #epilepsy

[Bárbara @Brbara123479578]

#dravetbrasil
#PurpleDay
#abe
@DravetUK @DSFeu @FundacionDravet @KetteValente @PauloLiberales5