Hadisələr
Inchstone Community Update Webinar
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…
Epilepsies Action Network Advocacy Update
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…
Learn How to Maximize Your Data with The 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…
Etiketdənkənar Müalicələrə Nadir Girişin Qorunması
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…
Programs to Help Care for Our Complex Kids – Inpatient and Outpatient
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…
Rare Caregiving: How to Ask for and Accept Help
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…
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. This will be the first of our monthly opportunities to…
DEE-lər üçün sümük sağlamlığı
Beyin-sümük bağlantısı haqqında daha çox öyrənmək üçün bizə qoşulun. Biz hələ də öyrənirik, lakin həm epilepsiya, həm də tutma əleyhinə dərmanlar (ASM) sümük sağlamlığına mənfi təsirlərlə əlaqələndirilir.
IEP Qəza Kursu
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.
Niyə EEG-lər Əhəmiyyətlidir və Nəyi Açığa Alırlar
Have you ever wondered about the benefits of EEG readings that our children receive? Join us for an illuminating session with Dr. Jay Pathmanathan, MD from Beacon Biosignals, pediatric epileptologist…
