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اختلال بینایی قشر مغز و DEEs
با ما همراه باشید تا در مورد اختلال بینایی قشر مغزی (CVI) هم از طرف مراقبان و هم از معلمان کم بینا در صرع های نادر بیشتر بدانید. شما خواهید شنید که CVI چیست، چه…


بحث DEE-P: CVI و 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…


چت انجمن DEE-P
به ما بپیوندید تا فرصتی برای ارتباط با سایر والدین/مراقبان داشته باشید و در مورد تجربیات خود در تربیت کودکان مبتلا به DEEs/صرع های نادر گفتگو کنید.


چت انجمن DEE-P
به ما بپیوندید تا فرصتی برای ارتباط با سایر والدین/مراقبان داشته باشید و در مورد تجربیات خود در تربیت کودکان مبتلا به DEEs/صرع های نادر گفتگو کنید.


هدیه ای برای نسل های آینده - اهدای مغز: چه چیزی را باید در نظر گرفت و چگونه کار می کند
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…


به روز رسانی انجمن پروژه Inchstone - بهار 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…
افزایش دسترسی به آزمایشهای بالینی و درمانهای جدید در سراسر DEE
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 sources.


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 talk about it ALL. We hope that everyone leaves feeling encouraged and knowing they aren't allow during this holiday season.