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.
Learn more about FDA Patient Listening Sessions at this link – https://www.fda.gov/patients/learn-about-fda-patient-engagement/patient-listening-sessionsNeed more resources? Join our community!