Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA

On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and after a GBS diagnosis. The 6 speakers captured various aspects of life with GBS, including:

  • Treatment & Diagnosis When the System Works
  • Treatment & Diagnosis When the System Does NOT Work
  • The Emotional Burden on the Family
  • Rehab, Recovery, and Residuals
  • Variant Perspective

The Foundation also described some unmet needs of the community and expressed a desire to work more closely with the FDA in the future. A full summary of the meeting can be find below.

CLICK HERE FOR THE FULL REPORT

Learn more about FDA Patient Listening Sessions at this link – https://www.fda.gov/patients/learn-about-fda-patient-engagement/patient-listening-sessions

Learn more about Guillain-Barre Syndrome here.

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