Arrangementer
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…
Epilepsi 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…
Lær hvordan du maksimerer dataene dine med 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…
Beskytter sjelden tilgang til off-label behandlinger
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…
Programmer for å hjelpe til med å ta vare på våre komplekse barn – poliklinisk og poliklinisk
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…
Sjelden omsorg: Hvordan be om og godta hjelp
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 Community Chat
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…
Bone Health for DEEs
Bli med oss for å lære mer om hjerne-benforbindelsen. Vi lærer fortsatt, men både epilepsi og anti-anfallsmedisiner (ASM) er assosiert med negative effekter på beinhelsen.…
IEP lynkurs
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-diskusjon – Livet med en udiagnostisert 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
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.
Hvorfor EEG er viktig og hva de kan avsløre
Har du noen gang lurt på fordelene med EEG-avlesninger som barna våre mottar? Bli med oss på en opplysende økt med Dr. Jay Pathmanathan, MD fra Beacon Biosignals, pediatrisk epileptolog...
