eventos
Seminario web de actualización da comunidade de 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…
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…
Aprende a maximizar os teus datos co 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…
Protexer o acceso raro a tratamentos fóra de etiqueta
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…
Programas para axudar a coidar dos nosos nenos complexos: pacientes hospitalizados e ambulatorios
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…
Coidados raros: como pedir e aceptar axuda
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…
Chat comunitario 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…
Saúde ósea para os 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.…
Curso intensivo IEP
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…
Discusión DEE-P: vida cun DEE non diagnosticado
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…
Chat DEE-P
Únete a nós para ter a oportunidade de conectar con outros pais/coidadores e falar sobre as nosas experiencias criando nenos con DEE/epilepsias raras.
Por que importan os EEG e que poden revelar
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…
