Hadisələr
Gələcək Nəsillər üçün Hədiyyə – Beyin Donorluğu: Nələrə Diqqət Etməli və Necə İşləyir
Övladlarının beyin toxumasını ölümdən sonra bağışlamaq qərarına gələn nadir epilepsiya xəstəsi analarla bu mühüm müzakirədə biz bu dərin şəxsi və çətin qərarla bağlı bir sıra kritik elementləri müzakirə edəcəyik, o cümlədən: 1. Necə və nə üçün donorluq qərarı verdilər2. Başa düşməyən ailə üzvlərini necə idarə etmək olar...
Inchstone Layihəsi İcma Yeniləməsi – 2024-cü ilin Bahar
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…
DEE-lərdə Klinik sınaqlara və yeni müalicələrə çıxışın artırılması
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…
DEE-P Fundraising Workshop
Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any…
DEE-P Fundraising Workshop
Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any…
CVI: The Parent Perspective
We are partnering with CVI NOW & Perkins School for the Blind to bring you a parent panel. We will discuss navigating your child’s CVI diagnosis and all that comes…
DEE-P Chat
In this safe and supportive space, you’ll connect with others who understand the unique challenges of raising a child with a severe rare epilepsies (aka DEEs). Whether you're navigating hospital…
