Family & Caregiver Resources

Print Resources

NARS1 Disorder Introductory Pamphlet

Understanding the Research Toolbox

Research Resources

  • Email us to coordinate blood and skin sample collection (more information on sample collection here)

  • Tell your story through our patient registry, RARE-X (find out more about this very important project here)

  • List of RARE-X surveys to prioritize:

    • Head-to-Toe Assessment (and any secondary surveys you get after completing this one)

    • Additional Surveys*

      • Vineland Adaptive Behavior Scales

      • ORCA (Observer-Reported Communication Ability) Measure

      • ABC Survey

      • QI-Disability Survey

      • CSHQ (Child Sleep Habits Questionnaire)

      • PediEAT (Pediatric Eating Assessment Tool)

      • Medication Survey

      • Diet Survey

      • CRID Alternative Participant ID Survey

      • Pediatric Epilepsy Learning Healthcare System (PELHS)

*These additional surveys can be found under subheadings 1) High Priority or 2) Patient Reported Data

Past Virtual Family Meetings

Other Video Resources