Veranstaltungen
DEE-P-Community-Chat
Nutzen Sie die Gelegenheit und treten Sie mit der STXBP1-Mutter und Sozialarbeiterin Amelia Seraphia Derr und ihrer Mutter Susan Bourgerie, einer Psychologin, in Kontakt, die letzte Woche unsere Sitzung zum Thema … geleitet haben.
Kortikale Sehbehinderung und die 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…
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…
DEE-P-Community-Chat
Nutzen Sie unsere Gelegenheit, mit anderen Eltern/Betreuern in Kontakt zu treten und sich über unsere Erfahrungen bei der Erziehung von Kindern mit DEEs/seltenen Epilepsien auszutauschen.
DEE-P-Community-Chat
Nutzen Sie unsere Gelegenheit, mit anderen Eltern/Betreuern in Kontakt zu treten und sich über unsere Erfahrungen bei der Erziehung von Kindern mit DEEs/seltenen Epilepsien auszutauschen.
Ein Geschenk für zukünftige Generationen – Gehirnspende: Was zu beachten ist und wie es funktioniert
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…
Das Inchstone-Projekt-Community-Update – Frühjahr 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…
Verbesserter Zugang zu klinischen Studien und neuen Behandlungen in den DEEs
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!
