Network of rare epilepsy organizations that collaborate on raising awareness and research for the rare epilepsies. We are patient-focused, collaborative and working with urgency!
External link for Rare Epilepsy Network (REN)
Washington, DC, US
Rare Epilepsy Network (REN) reposted this
Here are my highlights from the progress that we saw at #AES2024 for rare epilepsy syndromes: 1 - The future is now: tangible progress in disease-modification 2 - Beyond seizures in DEEs 3 - Beyond the largest DEEs https://lnkd.in/d5-sRMeY #Dravet #SYNGAP1 #STXBP1 #CDKL5
It's out and it's full of photos recapping #aes2024. Wishing you and your the happiest of holidays! December 2024 Rare Epilepsy ROUND UP https://wix.to/GWCvR6p
REN welcomes Tough Genes and looks forward to helping to support them in their mission of advancing scientific knowledge and medical understanding of the IRF2BPL gene. They strive to transform lives by driving breakthroughs in science, increasing awareness, and securing the resources necessary to find treatment and improve the quality of life for those impacted by this disorder. Help us welcome them and check out their website. https://lnkd.in/g45jxEQU to learn more!
Rare Epilepsy Network (REN) reposted this
Founder and President @ FAM177A1 Research Fund | Rare disease advocate | Presenter | MEd
My first AES conference was EVERYTHING and more! Eradicating seizures in FAM177A1 Disorder is our mission, and the insights gained here—combined with the support of these amazing friends and leaders in the neurologic and rare disease communities—are propelling us toward our goal faster than ever. Thanks to SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders, SLC6A1 Connect, and the GABA-A groups for welcoming me to your conferences and sharing your expertise. Big gratitude to Rare Epilepsy Network (REN), COMBINEDBrain, and Citizen Health for your visionary efforts to empower rare disease groups like ours, especially the nano-rares. We’re honored to be named a 2024 Partnership Grant Awardee by REN—what a boost to our journey! Huge thanks to the rare disease superstars who’ve become dear friends, shared their wisdom, and even made this daunting conference downright fun. Curing rare disease is tough, but this community makes it achievable—and even joyful. Let’s keep pushing forward together! #AES2024 #RareDisease #FAM177A1 #CUREFAM #Rareepilepsy
The REN booth in action! We are so proud to represent so many of our REN members and partners by sharing their information and materials. Shelley Frappier shareing some of REN’s initiatives with Zohreh Talebizadeh, Ph.D. RARE-X Global Genes
Rare Epilepsy Network (REN) reposted this
Qualitative Health Communication Researcher + Practitioner | Assistant Professor in Communication | Certified in Public Health (CPH) and Non-Profit Management (CNP) | Rare Epilepsy Advocate | Founder LGS Foundation
Very grateful to National Institute of Neurological Disorders and Stroke (NINDS) Director Walter Koroshetz for attending the Rare Epilepsy Network (REN) meeting yesterday and learning more about REN and the #rareepilepsies.
Rare Epilepsy Network (REN) reposted this
Join us for the second session in our series: "Developmental and Epileptic Encephalopathies: Now and Next." 🗓️12th December - 19.30 pm–20.30 pm CET This interactive event offers you the opportunity to hear from leading experts like Christina SanInocencio, PhD, CPH, CNP founder and former executive director of the Lennox-Gastaut Syndrome (LGS) Foundation and current chair of the Rare Epilepsy Network (REN) Submit your questions and register at: https://lnkd.in/e_BimcWV Registration closes December 8th!
Amazed, grateful, energized, empowered and all of the feels after our 2024 REN luncheon at The American Epilepsy Society meeting! Thank you to all of our speakers and attendees! We are looking forward to an even busier 2025!
We are ready to welcome those who want to connect, learn and collaborate in the rare epilepsy space! Find us at the exhibitor hall tomorrow American Epilepsy Society meeting.
Thank you to Partners Against Epilepsy Mortality (PAME) and Karen Utley for the opportunity to share the resources of Rare Epilepsy Network and our 150+ members during the exceptional conference. We stand with you to prevent all causes of epilepsy from #SUDEP and the many other causes of mortality that impact the rares. We have a joint PAME + REN work group co led by Karen and the awesome Alison Kukla, MPH Shout out to all the leaders engaged in this effort. Message us to get involved. Nora Wong Shelley Frappier Glenna Steele Nuala Summerfield Kate Still, Ph.D. JayEtta Hecker Gabrielle Conecker Sarah Drislane Terry Jo Bichell @niki armstrong Gardiner Lapham Katie Garbarini, MS, CGC @julie landons legacy #rareepilepsies