Eventos
Problemas gastrointestinales pediátricos en las DEE
Venga a escuchar sobre problemas gastrointestinales como el reflujo, las sondas de alimentación, el estreñimiento y más, de la mano del médico pediatra gastrointestinal y padre de KdVS, Russ Zwiener. La discusión estará dirigida por Kaci Fisher, miembro de la junta directiva de la Fundación del Síndrome de Koolen-de Vries y madre de KdVS.
Seminario web sobre actualización de la comunidad 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…
Actualización sobre la promoción de la Red de Acción contra las Epilepsias
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…
Aprenda cómo maximizar sus datos con el 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…
Protección del acceso poco común a tratamientos no aprobados
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 ayudar a cuidar a nuestros niños complejos: pacientes hospitalizados y 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…
Cuidados poco comunes: cómo pedir y aceptar ayuda
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 de 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…
Salud ósea para las 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 del 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 sobre DEE-P: la vida con un DEE no 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
Únase a nosotros para tener la oportunidad de conectarse con otros padres/cuidadores y conversar sobre nuestras experiencias al criar niños con DEE/epilepsias raras.
