Kompleks Uşaqlarımıza Baxmağa Kömək Proqramları - Stasionar və Ambulator
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…
Nadir qayğı: Yardım istəmək və qəbul etmək
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
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.…
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 müzakirəsi – Diaqnoz qoyulmamış DEE ilə həyat
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 Söhbəti
Digər valideynlər/baxıcılarla əlaqə saxlamaq və DEE/nadir epilepsiyaları olan uşaqları böyütmək təcrübəmiz haqqında söhbət etmək fürsəti üçün bizə qoşulun.
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…
Baxıcı Tükənmənin Qarşısının Alınması: Davamlılığın Yaradılması üzrə Seminar
Preventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo - STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
DEE-P İcma Çatı
Join us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist, who led our session last week on…
Kortikal görmə pozğunluğu və DEE-lər
Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. You'll hear what CVI is, what…
DEE-P Discussion: CVI and the DEEs
Join us for a conversation with caregivers about cortical visual impairment - diagnosis, therapies, adaptations and what life is like with CVI. Our guests will be DEE caregivers of children…