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Cortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)
In this webinar, you will learn more about what Cortical Visual Impairment (CVI) is, what things looks like to someone with CVI and how to manage care and adapt for…
Read MoreUndiagnosed
This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…
Read MoreRare Caregiving & Challenges with Self-Care – A DEE-P Discussion
This webinar was recorded on June 30th, 2023. Join us for this discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to…
Read MorePrograms to Help Care for Our Complex Kids – Inpatient and Outpatient
This webinar was recorded on June 7th, 2023. Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e.…
Read MoreGI Issues and Neurodevelopmental Disorders
This webinar was recorded on February 13th, 2023. In this webinar, hear about GI issues such as reflux, feeding tubes, constipation, and more! Speakers: Russ Zwiener, pediatric GI doctor and KdVS…
Read MoreUnraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone
“Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone” is the second in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our friends…
Read MoreAdaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays
“Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays” is the third in our 6-part series on Optimizing Therapies for those Living with DEEs in partnership with our…
Read MoreRECORDING – Advance Outcome Measures for Severely Affected Populations
Building a Consortium to Advance Outcome Measures for Severely Affected Populations This is a recording of the second workshop, held November 11th 2021, focused on Building a Consortium to Advance…
Read MoreRECORDING – ASSESSING STATUS AND OPPORTUNITIES
ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS This is a recording of day one of the workshop, held November 4th 2021, and was…
Read MoreSeizure Technology – Tracking
This is the first webinar in the series “Technologies to Help Manage Seizures”, highlighting seizure tracking technology. This webinar provides an overview of seizure tracking technology for families, with a…
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