Resources

Advocacy

Every Life Foundation
Little Lobbyists
Family Voices

Parents & Caregivers

Angel Aid
Caregiver Connect Video Series
Courageous Parents Network
Parents Helping Parents
Rare Mamas

Siblings

Deep Connections
VIP Sibling
Rare Sibling Stories - opportunity for siblings of individuals with rare diseases to share their stories

Families

Angel Flight NE - a 501(c)3 nonprofit organization that coordinates free air and ground transportation for medically stable patients seeking medical care for healthcare conditions including rare and ultra-rare diseases that requires them to travel hundreds if not thousands of miles for the specialized care they need
State-by-State Insurance Guide (USA) from Angelman Syndrome Foundation
Kids’ Waiver - Source for Children's Medicaid Waiver Programs
Child Neurology Foundation - STXBP1 overview
DEE-P - developmental epileptic encephalopathy resources for families
Epilepsy Foundation

A Mother’s Rest Foundation (AMR) - respite retreats including discounts for families with “extra needs”
Handicap Accessible Vehicles
Miracle Flights
Variety - The Children’s Charity - medical equipment and mobility

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*

*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.

Special Needs Trusts & ABLE Act

Able National Resource Center
Able Act
2021 SNT ABLE Comparison Download
USA Directory of Pooled Trusts

Music

“Behind the Blue”- Dedicated to our Children by Jamie Stem & Anne Johnson

“Drowning” - For our Parents you are never alone by Jamie Stem & Anne Johnson