Webinars & Other Content
- Managing the Journey with your Complex Child
- Brain Donation: What to consider, how it works and how it can help
- Cortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)
- Preventing Caregiver Burnout: A Workshop on Building Resilience
- Why EEGs Matter and What They Can Reveal
- Undiagnosed
- IEP Crash Course
- Bone Health for the DEEs
- Rare Caregiving & Challenges with Self-Care – A DEE-P Discussion
- Programs to Help Care for Our Complex Kids – Inpatient and Outpatient
- Protecting Rare Access to Off-Label Treatments
- Learn How To Maximize Your Data with The CRID
- GI Issues and Neurodevelopmental Disorders
- Epilepsy Surgery and Rare Genetic Epilepsies
- Ketogenic Diet and the DEEs
- Oral Health and Hygiene for Those Who Do Not Eat by Mouth
- Back To School SAP
- What are we learning about COVID-19 vaccines and infections in those with rare epilepsies?
- Planificación SAP de verano: lo que necesita saber y hacer para estar preparado
- Summer Seizure Action Planning – What you need to know and do to be prepared
- Why Brain Tissue Donation Matters
- Growth Attenuation Therapy – Everything You Want and Need to Know
- High-tech Options for Alternative Communication and Access within the Home
- Low-Tech/No-Tech Communication Systems for Children with Complex Communication Needs
- Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone
- Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays
- An Overview of Hypotonia and How it Impacts Overall Functioning and Development
- Pediatric Hospice Support & Care
- RECORDING – Advance Outcome Measures for Severely Affected Populations
- RECORDING – ASSESSING STATUS AND OPPORTUNITIES
- What can YOU do to help cure the epilepsies?
- Seizure Technology – Emerging Technologies to Predict and Detect Seizures
- Seizure Technology – Tracking
- Seizure Technology – Monitoring
- How Effective is Your Epilepsy Care?
- Rare Epilepsy Syndrome: ESES, CSWS, EECSWS?
- Be Prepared – Guiding You Through the Journey of Planning for a Secure Future for your DEE Child
- Seizure Action Plan Awareness
- Sudden Unexpected Death in Epilepsy (SUDEP) Part 3 – Family Perspectives
- Sudden Unexpected Death in Epilepsy (SUDEP) Part 2: What can we do?
- Nerve Stimulators- Could a VNS, DBS, or RNS Help?
- The ABCs of Clinical Trials Part 2 – What Every Rare Disease Family Should Know
- The ABC’s of Clinical Trials Part 1 – The Basics
- Sudden Unexpected Death in Epilepsy (SUDEP) Part 1: What do we know?
- Curing the Epilepsies Part 2
- Curing the Epilepsies Part 1
- Rescue Medications for DEEs Series – Part 4
- Autonomic Dysfunction/Dysautonomia
- Saving Our Telehealth for DEE Families
- Rescue Medications for DEEs Series – Part 3
- Rescue Medications for DEEs Series – Part 2
- COVID-19 Vaccines and Epilepsy – Focus on DEE Population
- Rescue Medications for DEEs Series – Part 1
- Promoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings
- Improving the Quality of Care in Rare Childhood Epilepsy
- Strategies for Learning at Home with your DEE Child and Engaging the Whole Family
- Navigating Safety for Pediatric Epilepsy Patients in COVID-19 Environment
- COVID -19 Through the Lens of Grief
- Genetics of DEE’s
- Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19
- IEPs for Children with Severe DEEs
- Overview of DEE’s and DEE-P
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