Hadisələr
Baxıcı Tükənmənin Qarşısının Alınması: Davamlılığın Yaradılması üzrə Seminar
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, Susan Bourgerie, a psychologist. Their workshop is based on the belief in our innate capacity to adapt, recover, and even thrive despite the effects of…
DEE-P İcma Çatı
Join us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist, who led our session last week on preventing caregiver burnout and building resilience. During this session, you can share your experiences, ask questions and connect with other parents/caregivers about our lives raising…
Cortical Visual Impairment and the 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 it means for your child, how to get the right kind of therapy and adapt your home/life. Our guests will be rare epilepsy/DEE mom Stephanie…
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 living with CVI: Anne Thompson Heller Stephanie Kung Madeleine Oudin Rachel Gaddis
DEE-P İcma Çatı
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
DEE-P İcma Çatı
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
Gələcək Nəsillər üçün Hədiyyə – Beyin Donorluğu: Nələrə Diqqət Etməli və Necə İşləyir
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…
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…
