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
Sibling research by Cincinnati Children's Hospital

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
Got Transition is a resource program from The National Alliance to Advance Adolescent Health
Simons Guardianship Resources

Special Needs Trusts & ABLE Act

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

Regional Chapters

Regional Group programs are being launched all over the world for local support and connections.

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