GETA

Despite rare genetic neurodevelopmental disorders such as genetic epilepsies / DEEs being well suited to n of 1 trials there have only been a handful performed. N of 1 trials allow assessment of promising treatments in rare monogenetic epilepsies. #GETA2025

Understanding the natural history of rare disorders such as developmental epileptic encephalopathies is key to developing treatments, clinical trials, registration and reimbursement. The DEER natural history study is now open for recruitment globally via the QR code. #GETA2025

Finding the underlying cause in genetic epilepsies is important, but only the start of working towards an understanding and treatment. @ingridscheffer #GETA2025

We’re off! Sara James opens the conference, for the 8th time. #GETA2025

Don't miss out on the latest clinical research and cutting edge science in #GeneticEpilepsy and #DEEs at our upcoming conference #GETA2025, May 3rd 9:00am (UTC+10). You can join via livestream globally. Register via: eventbrite.com.au/e/geta-2025-ti…

Last chance to book for dinner after our GETA conference on May 3rd. We will be closing off dinner registrations this Wednesday. So, book your tickets for dinner and attend the conference in person or via livestream at: eventbrite.com.au/e/geta-2025-ti…

📢 New Survey! The ORCA measure is live in @S_Searchlight! 🗣 ORCA empowers caregivers to share their expert knowledge and captures all communication forms—not just speech—helping researchers understand rare neurodevelopmental disorders. 🔗 Take the ORCA: bit.ly/Simons_Searchl…

Are you coming to our GETA2025 conference May 2-3 in Melbourne to hear the latest on genetic epilepsy and DEEs? We'd love to see you there. We would also love to have you join us for dinner. Confirm your place by April 9 so you don't miss out. eventbrite.com.au/e/geta-2025-ti…

Our 2025 conference is just over four weeks away. A great line-up of speakers. Meet other families and parents of children with genetic epilepsy / DEEs. Join us for dinner after the conference in a casual setting. Tickets available from: eventbrite.com.au/e/geta-2025-ti… #Epilepsy #DEE

Exciting News! 🌍📊 The Simons Searchlight Seizure History survey is now live for French and Dutch-speaking participants! If you’re enrolled in our study and experience seizures, complete the survey today to contribute to vital research. 👉 Start here: bit.ly/Simons_Searchl…

Did you know that the #FER course early bird registrations have been extended until 19/5/24? So, what are you waiting for? To learn more about how family engagement partners (consumers) and researchers can work better together, please register here: bit.ly/3xZZyeQ

Well said #ProfAngelaMorgan. Plain English summaries of research papers are important so parents can understand what targeted therapies to try with their children. Without a diagnosis it is harder to engage in the most targeted speech therapy. @geneticepilepsy

Understanding speech and the characteristics of each genetic condition is critical when developing clinical trial protocols. Clinical guidelines fall short, often lacking speech and communication detail. #GETA2024 #DEE #epilepsy

Current research in speech disorders in DEEs with Professor Angela Morgan @UniMelb @MCRI_for_kids #DEE #speech #research

Sleep problems are complex and often it takes time to understand the predisposing factors and build a plan to address these. #GETA2024 #sleep #DEE #sleepdisorders

Sleep and epilepsy are connected. More than 50% of people with DEE’s have sleep problems and sleep issues correlate to more seizures - Dr Annie Chin #GETA2024 #sleep #DEE #autism @Austin_Health

What constitutes a sleep problem in DEEs? #GETA2024 #sleep #DEE #epilepsy

Sleep problems are common in DEEs and can be part of the underlying disorder. Dr Annie Chiu, Paediatric Epilepsy Fellow @Austin_Health @ingridscheffer #DEE #GETA2024

An engaging first day of the #GETA2024 conference hearing from families, clinicians, and scientists about genetic epilepsies. Also such a privilege to hear my supervisor @ingridscheffer speak about #DEEs & precision medicine. @geneticepilepsy

A panel discussion to end the day. How do we collectively get treatments for our children? @ingridscheffer @drkbhowell #profphillippearl #drsalrico