Resources
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Newly Diagnosed
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Medical Resources
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Sibling Resources
Deep Connections Sibling Resources
Rare Sibling Stories - siblings of individuals with rare diseases can share their stories
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Financial Resources
State-by-State Insurance Guide (USA) from Angelman Syndrome Foundation
Kids’ Waiver - Source for Children's Medicaid Waiver Programs -
Special Needs Trusts & ABLE Act
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Other Resources
Angel Flight NE
Miracle FlightsNational Mobility Equipment Deals Association
Variety - The Children’s Charity - regional programs and mobility equipment -
Transition to Adulthood
Transition to Adulthood Checklist from Rare Epilepsy Network
Education Transition for Children with Neurological Conditions is a free, self-paced online class about transitioning to adulthood from the Pediatric Epilepsy Surgery Alliance
Aging and Disabilities Resources for the Administration for Community Living (US Government)
Got Transition is a resource program from The National Alliance to Advance Adolescent Health
Simons Searchlight Guardianship Resources
VIPrareCARE.com and the C.A.R.E. Binder* -
Developmental & Epileptic Encephalopathy Resources
Epilepsy Foundation resources:
Developmental Toolkit
Telehealth Checklist in English
Telehealth Checklist in Spanish
Epilepsy Pipeline TrackerDEE-P Connections - developmental and epileptic encephalopathy resources for families
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Music
“STX and Stones” - by Casey Baum of Clara Inspired
“Behind the Blue”- Dedicated to our Children by Jamie Stem & Anne Johnson
“Drowning” - For our Parents you are never alone by Jamie Stem & Anne Johnsonoes here
*VIPrareCARE.com and the C.A.R.E. Binder were proudly developed in collaboration with the Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation, TSC Alliance and other organizations who support families like yours and was made possible through UCB funding and partnership.