Previous Webinars

Blended Diets-2

Blended Diets 101: Benefits, Basics & Getting Started

ASO Webinar-3

Understanding ASOs & Informed Consent

Seizure Clusters vs Status-2

Seizure Clusters Vs. Status: What Every Caregiver Needs To Know

Pulm Decision Making

Navigating Respiratory Care for Medically Complex Children

Palliative Care

Caring Together: Families, Providers, and the Role of Palliative Support

GI Decision Making

Navigating GI Interventions: From Testing to Treatment

Lightening the Load

Lightening the Load: How AI Can Support Families Managing Complex Care

CP Paren Perspectives

Parent Perspectives Insights Into Medical Decision-making

Copy of What’s at stake for Medicaid

What’s At Stake for Medicaid and How To Take Action

Real Moms, Real Stories

Real Moms, Real Stories: Advocacy That Inspires

Relationships

Relationships 101: Marriage & Parenting a Medically Complex Child

Epilepsy Surgery, Research Updates and All You Need to Know-2

The Life-Saving Nature of Epilepsy Surgery

Transition Checklist (YouTube Thumbnail)

Growing Together: Navigating the Life Stage Checklist for Families

TheConnectParent

ALL ABOUT The Connected Parent

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How to Get Grants and Funding for Medical Expenses

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Sleep & DEEs

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Traveling with Your Medically Complex Child

Clinical Trials (1)

Increasing Access to Clinical Trials and New Treatments Across the DEEs

NJ

Managing the Journey with your Complex Child

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Brain Donation: What to consider, how it works and how it can help

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Cortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)

resilience

Preventing Caregiver Burnout: A Workshop on Building Resilience

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Why EEGs Matter and What They Can Reveal

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Undiagnosed

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IEP Crash Course

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Bone Health for the DEEs

Caregiver DEE-P Discussion - Help (1)

Rare Caregiving & Challenges with Self-Care – A DEE-P Discussion

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Programs to Help Care for Our Complex Kids – Inpatient and Outpatient

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Protecting Rare Access to Off-Label Treatments

crid

Learn How To Maximize Your Data with The CRID

Peds-GI

GI Issues and Neurodevelopmental Disorders

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Epilepsy Surgery and Rare Genetic Epilepsies

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Ketogenic Diet and the DEEs

Dental-Health Small

Oral Health and Hygiene for Those Who Do Not Eat by Mouth

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Back To School SAP

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What are we learning about COVID-19 vaccines and infections in those with rare epilepsies?

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Planificación SAP de verano: lo que necesita saber y hacer para estar preparado

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Summer Seizure Action Planning – What you need to know and do to be prepared

brain

Why Brain Tissue Donation Matters

grow

Growth Attenuation Therapy – Everything You Want and Need to Know

tobii

High-tech Options for Alternative Communication and Access within the Home

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Low-Tech/No-Tech Communication Systems for Children with Complex Communication Needs

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Unraveling the Mysteries of Ataxia, Hypertonicity, Athetosis and Mixed Tone

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Adaptive Equipment and Therapy Strategies for Children with Severe Developmental Delays

adaptive-equip-webinar

An Overview of Hypotonia and How it Impacts Overall Functioning and Development

Hands-Circle

Pediatric Hospice Support & Care

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RECORDING – Advance Outcome Measures for Severely Affected Populations

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RECORDING – ASSESSING STATUS AND OPPORTUNITIES

CTE 2

What can YOU do to help cure the epilepsies?

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Seizure Technology – Emerging Technologies to Predict and Detect Seizures

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Seizure Technology – Tracking

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Seizure Technology – Monitoring

participating in research

How Effective is Your Epilepsy Care?

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Rare Epilepsy Syndrome: ESES, CSWS, EECSWS?

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Be Prepared – Guiding You Through the Journey of Planning for a Secure Future for your DEE Child

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Seizure Action Plan Awareness

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Sudden Unexpected Death in Epilepsy (SUDEP) Part 3 – Family Perspectives

Developmental And Epileptic Encephalopathies

Sudden Unexpected Death in Epilepsy (SUDEP) Part 2: What can we do?

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Nerve Stimulators- Could a VNS, DBS, or RNS Help?

Researching

The ABCs of Clinical Trials Part 2 – What Every Rare Disease Family Should Know

gentic modifiers

The ABC’s of Clinical Trials Part 1 – The Basics

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Sudden Unexpected Death in Epilepsy (SUDEP) Part 1: What do we know?

CTE 2

Curing the Epilepsies Part 2

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Curing the Epilepsies Part 1

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Rescue Medications for DEEs Series – Part 4

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Autonomic Dysfunction/Dysautonomia

medicine via technology

Saving Our Telehealth for DEE Families

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Rescue Medications for DEEs Series – Part 3

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Rescue Medications for DEEs Series – Part 2

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COVID-19 Vaccines and Epilepsy – Focus on DEE Population

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Rescue Medications for DEEs Series – Part 1

Sibs

Promoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings

epilepsyQI

Improving the Quality of Care in Rare Childhood Epilepsy

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Strategies for Learning at Home with your DEE Child and Engaging the Whole Family

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Navigating Safety for Pediatric Epilepsy Patients in COVID-19 Environment

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COVID -19 Through the Lens of Grief

genetics

Genetics of DEEs

covid19

Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19

preparing and planning

IEPs for Children with Severe DEEs

SCN8A Information Resource Center Logo

Overview of DEE’s and DEE-P