Arrangementer
Preventing Caregiver Burnout: A Workshop on Building Resilience
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,…
DEE-P Community Chat
Bli med oss for en mulighet til å komme i kontakt med STXBP1-mor og sosialarbeider Amelia Seraphia Derr og hennes mor, Susan Bourgerie, en psykolog, som ledet økten vår forrige uke på...
Kortikal synshemming og 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
Bli med oss for en mulighet til å komme i kontakt med andre foreldre/omsorgspersoner og prate om våre erfaringer med å oppdra barn med DEE/sjeldne epilepsier.
DEE-P Community Chat
Bli med oss for en mulighet til å komme i kontakt med andre foreldre/omsorgspersoner og prate om våre erfaringer med å oppdra barn med DEE/sjeldne epilepsier.
En gave til fremtidige generasjoner – Hjernedonasjon: hva du bør vurdere og hvordan det fungerer
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…
The Inchstone Project Community Update – Våren 2024
Bli med i Inchstone Project Research Team for en oppdatering om fremdriften i vår innsats for å lage en rekke vurderingsverktøy som nøyaktig kan måle fremgang i vår...
Øke tilgangen til kliniske studier og nye behandlinger på tvers av DEE-ene
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…
