Viðburðir
Sjónskerðing í heilaberki og DEEs
Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. You'll hear what CVI is, what…
DEE-P Discussion: CVI and the DEEs
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…
DEE-P samfélagsspjall
Vertu með okkur til að fá tækifæri til að tengjast öðrum foreldrum/umönnunaraðilum og spjalla um reynslu okkar af því að ala upp börn með DEEs/sjaldgæfar flogaveiki.
DEE-P samfélagsspjall
Vertu með okkur til að fá tækifæri til að tengjast öðrum foreldrum/umönnunaraðilum og spjalla um reynslu okkar af því að ala upp börn með DEEs/sjaldgæfar flogaveiki.
Gjöf fyrir komandi kynslóðir - Heilagjöf: Hvað ber að huga að og hvernig það virkar
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…
Uppfærsla Inchstone Project Community - vorið 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…
Aukið aðgengi að klínískum rannsóknum og nýjum meðferðum í öllum 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…
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.
How to Get Grants and Funding for Medical Expenses
DEE-P Connections, in association with DYNC1H1 Association, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding…
ALL ABOUT The Connected Parent
Join us and the founder of The Connected Parent, Julie Walters. The Connected Parent is like Yelp, but for families that have kids with disabilities!
Surviving the Holidays – A DEE-P Chat
Join us as we chat about navigating the holidays with our medically complex kids. From finding the perfect gifts, making memories, or spending time in the hospital we plan to…
