Patient & Care Partner Panel: Proactive in Action (RECORDING)

  • Be iNFormed
  • General Education
  • Video
  • Video (Newer)

Patient Panel, NF Midwest iNFo Fair – October 2025

CHAPTERS

00:00 Opening and panel discussion
06:59 Why Patient Voices Matter in Research
12:16 Don’t Let the System Set the Ceiling
15:59 Ask for the Accommodations Your Child Needs
19:16 Technology as an Accommodation
23:59 Advocacy Becomes Their Voice
26:48 Care for the Advocate and the Whole Family
28:51 Start Preparing Before the Teen Years