Dravet Syndrome Foundation Spain
@DSFeu
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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
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". 👉 Thanks to all authors and experts involved🙏
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⏳ 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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📢 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: 💜
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RT @EpilepsiaOpen: Key point: Spanish PCPs are generally aware of genetic epilepsy but lack full knowledge of DS and PAGs.
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New article out on #Dravet syndrome, highlighting the challenges and advancements in diagnosing and treating Dravet syndrome in Spain. 👉 Read the full article here: #DravetSyndrome #Research
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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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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 👉
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RT @Dr_RKarda: Our next @_BSGCT PPE series talk, we have the amazing Prof Nicola Brunetti-Pierri talking on "Liver-directed gene therapy fo…
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🌟 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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#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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RT @EpiEpiNet: 🗓️Lisbon, 5-7 June 2024 👉Do not miss the chance to participate in the EpiC2024 Epilepsy Conference 👉EpiC2024 will gather bas…
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RT @MantegazzaMassi: Great interactions at the European Dravet Syndrome Conference 2024 in Madrid, Spain. Here with my postdoc Jacqueline…
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RT @pacientesPOP: El #SíndromeDeDravet es una enfermedad neurológica. Provoca crisis epilépticas frecuentes y difíciles de controlar. Afec…
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RT @EpiCARE_ERN: The @DSFeu organised the 2024 European Dravet Syndrome Conference, on 14th and 15th of March in Madrid. The aim of the mee…
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RT @MartinaMainard1: Thrilled to receive the best poster award at the #EDSC2024! Thanks to the Dravet Sindrome Foundation for these two ama…
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🏆 Congratulations to Franck Kalume for his unwavering support to the Dravet Foundation! Your commitment is truly appreciated and makes a significant impact on those battling Dravet syndrome. #DravetAwards #Support #Gratitude
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