Eventos
Un regalo para las generaciones futuras: donación de cerebros: qué considerar y cómo funciona
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…
Actualización de la comunidad del Proyecto Inchstone - Primavera de 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…
Aumento del acceso a ensayos clínicos y nuevos tratamientos en las EDE
Únase a nosotros para conversar sobre un modelo prometedor de ensayos clínicos para nuevos tratamientos para la epilepsia que aceleren el acceso a la comunidad más amplia de EDE. El diseño de “ensayo de cesta” se utiliza en ensayos clínicos de medicamentos destinados a tratar los síntomas de quienes viven con EED, incluidas las convulsiones. Este enfoque amplio es diferente al estándar actual...
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 nationally and internationally. Hear all about packing, planning, meds, supplies, special equipment and more. Ask your questions of these seasoned mom travelers and learn their…
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.
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 questions.
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 along with it.
Chat DEE-P
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 stays, coordinating multiple therapies, or managing the emotional toll, this group provides an opportunity to share experiences, offer and receive advice, and build a community…
