Our friends at CURE Epilepsy are offering a free LIVE webinar: Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research Date: Tuesday, June 14, 2022 Time: 3:00-4:00 PM CST Register: cureepilepsy.org/webinars/ Learn More Here: dup15q.org/all-events/web…

It’s happening: #CZIRareAsOne Annual Meeting. Representing #CNVCommission with Ring14 USA, Project 8p and Dup15q Alliance

📢 Researchers: CURE Epilepsy is partnering with Ring14 USA in its Rare Epilepsy Partnership Award for $100K. LOIs due 6/31/22. Check out our R14 research priorities 👇🏻👇🏻👇🏻 ring14usa.com/index.php/rese…

We were to build capacity and so we launched a Commission on Novel Tech for Neuro CNVs. Now very excited that our work will be published in the American Journal of Human Genetics. Ring14 USA Vanessa Vogel-Farley Chan Zuckerberg Initiative #RareAsOne Dup15q Alliance Yssa DeWoody

If you have at least one child in your household living with a #neurologic condition and are struggling to access #digital resources you may be eligible to receive a Chromebook and hotspot with a year's worth of data. Review eligibility and apply here: bit.ly/3mlkB2g

LOIs Due in 1 week! 7 Granting opportunities for 7 different rare epilepsies, including Ring14 Syndrome, in partnership with CURE Epilepsy. Please retweet and help us increase the pool of quality, innovative proposals!

Happy to share this new paper on published in AJHG from the Commission on #Neurodevelopmental #CNVs. Such gratitude to all the commission members! Ring14 USA is a founding member along w/Project 8p and Dup15q Alliance Link: tinyurl.com/CNVRoadmap.

Please consider donating to Ring14 USA during our #GivingTuesday campaign. We’re support families who are beyond tired. We’re funding critical research and a MDC for our children. We’re raising awareness. Help us. ring14usa.networkforgood.com/projects/17926…

Ring14 USA is excited to have Silvia Weitzman and Yssa DeWoody at #AES2022 representing the Ring14 community - learning, networking, advocating, and raising awareness!

AES early career funding proposals due Jan 23, 2023. AES partners with many rare epilepsy groups to fund research into our disorders, stretching everyone’s dollars. Please consider writing a proposal to better understand what causes epilepsy in R14! aesnet.org/research-fundi…

Ring14 USA is excited to be a part of the UPenn Million Dollar Bike Ride by ODC ‘s 10th anniversary ride!!! Save the date and let’s #RideForRing14 and all the other rare orgs!!! June 10th, 2023 The Orphan Disease Center @ UPenn 🎗️🦓🚴‍♀️🚴🚴‍♂️🦓🎗️

Our friends at the Epilepsy Foundation are hosting a Webinar: Clinical Trials: What are they and who/how do they help? Join us for this webinar to learn from the experts and hear from people who have participated on their experience. Register: bit.ly/3GY7qzE

In the Unites States, 25 million people suffer from rare disease. Globally, close to 400 million people suffer from a rare disease. Share and spread awareness this Rare Disease Day. #raredisease #rarediseaseday #rarediseaseday2023#8pheroes #project8p #chromosome8p #chromosom ...

Thanks Ingo Helbig for highlighting Ring Chromosome 20 - r(20) - today! Both r(20) and r(14) are characterized by drug-resistant epilepsy, with r(14) having early onset while r(20) erupts in elementary age children. Old school karyotype still best diagnostic tool to find rings!

Ring14 USA is proud to be a part of this partnership with Project 8p, Dup15q Alliance, and Illumina Here's moms moving mountains! illumina.com/company/news-c…

📢Please consider submitting an LOI focused on Ring14 research initiatives for CURE Epilepsy's 2023 Rare Epilepsy Partnership Award with Ring14 USA. LOI's due June 26th, 2023. We need quality R14 researchers!👩🏿‍🔬👩🏻‍🎓👩🏿‍⚕️🧑🏽‍🔬👩🏽‍💻 Retweet! ring14usa.com/index.php/rese…

This is such a hard and terrifying subject to this within our at risk communities, but we must. Thank you Pediatric Epilepsy Surgery Alliance for hosting this webinar. Thank you @NatalieProject for doing this work.

Please share‼️Our center for Neurogenetics, is jointly (adult Epilepsy & pediatric neurology) recruiting a neurologist with focus: ➡️ Exclusively genetic epilepsies 🧬 ➡️ Peds 👦👧🏿 + adult 👩 👨🏽 ➡️ Care 💊+ research 🧐 [academic + industry sponsored] careers.uth.tmc.edu/us/en/job/2400…