Among patients without identified cause for their #epilepsy: 19% of clinicians would consider WGS ONLY for patients where TREATMENT options were available based on results HEAR THIS 📣 Knowing the etiology of epilepsy AND Connecting to a community of people with THAT etiology

We greatly appreciate the funding support provided by Dravet Syndrome Foundation to work w/ Dr. Lori L. Isom on a new #MGE transplantation project in rabbits dravetfoundation.org/dsf-announces-…

Dravet Syndrome Foundation kicked off the weekend at #AES2023 by bringing together researchers, physicians, advocates, & industry for their annual Research Roundtable, which focused on research projects the DSF has funded to address challenges associated with Dravet syndrome and other DEEs.

Great insights as always on #AES2023 from Ana Mingorance! Lots of promise for #Dravet and other DEEs, but still some challenges to overcome

A heartfelt 💟Thank You💟 from #TeamDSF to each and every member of our incredible community. Your unwavering support, generous donations, and inspiring stories fuel our mission every day. 💜🦋 #dravet #dravetsyndrome

Key point: "Discovery of SCN1A variants as genetic biomarkers for Dravet syndrome has aided diagnosis & may partly explain the higher number of articles identified for Dravet syndrome than Lennox–Gastaut syndrome." Find this & more from Epilepsia at p0.vresp.com/buWt6p.

"A comprehensive & innovative approach to reduce sudden death in patients with epilepsy.” Our SUDEP & Seizure Safety Checklist is a simple tool that enables health professionals to have that conversation with patients about risk safety. Find out more: sudep.org/checklist

An important announcement this morning for the #Dravet community as Encoded Therapeutics shares regulatory clearances enabling them to move forward with trials for their #genetherapy candidate in the US and Australia businesswire.com/news/home/2024…

This position is still open for US board certified epileptologists who want to care for people (adult+peds) with genetic forms of epilepsy. Strong clinical genetic support and research environment provided.

Time is ticking... The #ILAE e-Forum: Optimal models of care during transition from childhood to adulthood is in 2 DAYS on 16 February at 14:30 UTC. Register now for free and gain access to the pre-reading materials: ilae.org/e-forum4. #epilepsy #epilepsyeducation yesILAE

Catastrophic neurological disorders in children are often caused by a single gene mutation. Most have no effective treatments, making it a huge unmet need. Dr. Heather Mefford @hcmefford.bsky.social, MD, focuses on neurological diseases like epilepsy & works with PTNI to alter the landscape of these disorders.

At UCB, we understand the power of listening to and learning from patient communities to help us deliver better outcomes. This #PurpleDay2024, learn from rare #epilepsy leaders Karen and Veronica in our most recent episode of Raring to Listen. Click to listen⬇#EpilepsyAwareness

It was my pleasure to be a guest on UCB's Raring to Listen Podcast discussing quality of life for families and patients living with a rare epilepsy

2024 DSF Research Grant applications are now open! We offer five grant categories! To find out more details about each grant category and apply today, visit bit.ly/3THkqP7!

I'm looking forward to hearing more from Dr. Papedlis about his work on biomarkers for #Dravet at the upcoming DSF Conference! Are you joining us? See the agenda and register: DSFConference.org

Loved getting to meet and hear more about the research Dr. Alhajj and her colleagues at University Hospitals have done looking at limb swelling in #Dravet.

The Cook Children's art robot 🤖 #Spikelangelo is back at work today on another portrait for #DravetSyndrome Awareness month! Stay tuned to see the final product later today! Dravet Syndrome Foundation

Welcome to the 2024 DSF Family & Professional Conference! 🌟 Now that our setup is complete, we’re ready to embark on a journey of learning, sharing, and connecting with all of you.

Today, we honored our loved ones during our 3rd annual butterfly release at our Wings of Hope event. 🦋✨ Each butterfly represents a story of resiliency, love, and our collective hope for a cure. #DSFConference #DravetSyndromeAwarenessMonth #CureDravet #DravetCommunity

📢If you want to challenge yourself with an exciting gene therapy project for DEEs and join a fantastic, passionate and motivated team, do not hesitate to apply for this position.