Events
Çima EEG girîng e û ew çi dikarin eşkere bikin
Have you ever wondered about the benefits of EEG readings that our children receive? Join us for an illuminating session with Dr. Jay Pathmanathan, MD from Beacon Biosignals, pediatric epileptologist Ingo Helbig from Children's Hospital of Philadelphia and Leah Schust Myers and Shawn Egan from our partners at FamilieSCN2A Foundation for an EEG 101 and…
Pêşîlêgirtina şewitandina lênêrînê: Atolyeyek li ser avakirina berxwedanê
Pêşîlêgirtina şewitandina lênihêrker: Atolyeyek li ser Avakirina Berxwedêriyê ji hêla keçek dayikek ecêb ve ji we re tê - dê û Karkerê Civakî STXBP1, Amelia Seraphia Derr û diya wê,…
DEE-P Community Chat
Ji bo derfetek ku em bi dayika STXBP1 û Kedkara Civakî Amelia Seraphia Derr û diya wê, Susan Bourgerie, psîkologek, ku rûniştina me ya hefteya borî rêve kir, bi me re têkilî daynin…
Kêmasiya Dîtina Kortîkal û DEE
Tevlî me bibin ku hem ji lênihêrkeran û hem jî ji mamosteyek astengdarên dîtbar ên di epîlepsiyên kêm de li ser Kêmasiya Dîtina Kortîkal (CVI) bêtir fêr bibin. Hûn ê bibihîzin ku CVI çi ye, çi…
Gotûbêja DEE-P: CVI û DEE
Join us for a conversation with caregivers about cortical visual impairment - diagnosis, therapies, adaptations and what life is like with CVI. Our guests will be DEE caregivers of children living with CVI: Anne Thompson Heller Stephanie Kung Madeleine Oudin Rachel Gaddis
DEE-P Community Chat
Tevlî me bibin ji bo derfetek ku em bi dêûbavên din / lênihêrkerên din re têkildar bin û li ser serpêhatiyên me yên mezinkirina zarokên bi DEEs / serpêhatiyên nadir sohbet bikin.
DEE-P Community Chat
Tevlî me bibin ji bo derfetek ku em bi dêûbavên din / lênihêrkerên din re têkildar bin û li ser serpêhatiyên me yên mezinkirina zarokên bi DEEs / serpêhatiyên nadir sohbet bikin.
A Gift for Future Generations – Brain Donation: What to Consider and How it Works
In this important discussion with rare epilepsy moms who made the decision to donate theirs children's brain tissue upon death, we will discuss a number of critical elements about this…
The Inchstone Project Community Update – Spring 2024
Please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our…
Zêdekirina gihîştina ceribandinên klînîkî û dermankirinên nû li seranserê DEEs
Join us for a conversation about a promising model of clinical trials for new epilepsy treatments that accelerate access to the wider community of DEEs. The “basket trial” design is used in clinical trials for medicines aiming to treat symptoms of those living with DEEs, including seizures. This broad approach is different than the current standard…
Traveling with your medically complex child
In this extended discussion, we will hear from a group of DEE moms about how they manage and plan for adventures and travel with their medically complex children - both…
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
