Évènements
Webinaire de mise à jour de la communauté Inchstone
The tools that are currently being used to measure the progress of people with developmental and epileptic encephalopathies (DEEs) are not able to capture their small improvements, which could jeopardize…
Mise à jour du plaidoyer du Réseau d’action contre l’épilepsie
Last Fall 2022, a new consortium - Epilepsies Action Network (EAN) - launched to develop national government relations strategies to increase federal funding for research, translation, care, and cures for…
Apprenez à maximiser vos données avec le CRID
Join us for this 30 min webinar to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children) involved in…
Protéger l’accès rare aux traitements hors AMM
Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not "medically necessary"? Is coverage denied because treatments that may work for you or…
Programmes pour aider à prendre soin de nos enfants complexes – patients hospitalisés et ambulatoires
Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e. ventilator), tube fed, etc. This is a medical…
Soins rares : comment demander et accepter de l'aide
Join us for a discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to care for ourselves but that can often seem…
Discussion communautaire DEE-P
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. This will be the first of our monthly opportunities to…
Santé osseuse pour les DEE
Join us to learn more about the brain - bone connection. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health.…
Cours accéléré du PEI
School is just around the corner for many. It's a good time to revisit the world of IEPs Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, will join…
DEE-P Discussion – Life with an Undiagnosed DEE
Come join us as we discuss the experience of having a child with an undiagnosed rare disorder. We’ll discuss different ways of navigating the experience, the challenges, and the benefits…
DEE-P Chat
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
Pourquoi les EEG sont importants et ce qu'ils peuvent révéler
Vous êtes-vous déjà interrogé sur les avantages des lectures EEG que reçoivent nos enfants ? Rejoignez-nous pour une séance éclairante avec le Dr Jay Pathmanathan, MD de Beacon Biosignals, épileptologue pédiatrique…
