Peristiwa
Mencegah Burnout Pengasuh: Bengkel Membina Daya Tahan
Preventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo - STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
Sembang Komuniti DEE-P
Sertai kami untuk peluang berhubung dengan ibu STXBP1 dan Pekerja Sosial Amelia Seraphia Derr dan ibunya, Susan Bourgerie, seorang ahli psikologi, yang mengetuai sesi kami minggu lalu pada…
Kerosakan Penglihatan Kortikal dan DEE
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…
Perbincangan DEE-P: CVI dan 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…
Sembang Komuniti DEE-P
Sertai kami untuk peluang untuk berhubung dengan ibu bapa/penjaga lain dan berbual tentang pengalaman kami membesarkan kanak-kanak dengan DEE/epilepsi yang jarang berlaku.
Sembang Komuniti DEE-P
Sertai kami untuk peluang untuk berhubung dengan ibu bapa/penjaga lain dan berbual tentang pengalaman kami membesarkan kanak-kanak dengan DEE/epilepsi yang jarang berlaku.
Hadiah untuk Generasi Akan Datang – Derma Otak: Perkara yang Perlu Dipertimbangkan dan Cara Ia Berfungsi
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…
Kemas Kini Komuniti Projek Inchstone – Musim Bunga 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…
Meningkatkan Akses kepada Percubaan Klinikal dan Rawatan Baharu Di Seluruh 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…
