Resources

Primrose Syndrome Teacher Guide

• This practical guide helps teachers and school staff understand how Primrose Syndrome may affect communication, learning, hearing, vision, movement, stamina, behavior, and health at school. It includes helpful classroom adjustments and a one-page pupil snapshot families can complete and share with their child’s educational team.

  Please download and share it with your child’s teachers, therapists, school nurse, and support staff.

General Support

• Rare Parenting Magazine

• Once Upon A Gene Podcast

• Global Genes

• National Organization for Rare Disorders (NORD)

• Simons Searchlight

Autism Support

• Autism Speaks

• Autism Society

Caregiver and Sibling Resources

• RARE Disease Siblings Resource Guide (Global Genes)

• Raregivers Global

• Rare Mamas

• ​​A Mother’s Rest

Assistive Devices/Medical Equipment

• National Mobility Equipment Dealers Association

• Variety, The Children’s Charity

Travel Resources

• Angel Flight Network

• Miracle Flights: Commercial flights anywhere in the US (household income requirements)

• Mercy Medical Angels: Ground and air transportation

• PALS Sky Hope: Free flights for medical patients requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially

Fundraising Resources

• Help Hope Live: Medical fundraising for the expenses insurance doesn’t cover