fda pATIENT lISTENING SESSION
On May 5, 2020, Cure VCP Disease was granted a Patient Listening Session with leadership of the U.S. Food and Drug Administration (FDA). During the meeting, the FDA listened to five patients' and caregivers' stories to better understand their experiences with VCP disease & IBMPFD. This was an important opportunity to bring attention to the burden and needs of the VCP disease community. We appreciate the bravery and efforts of those patients and caregivers who shared their stories.
One of the comments made by an FDA representative was that she found the meeting "incredibly educational" and "brought to life a greater understanding of the disease."
The meeting was closed to the public and therefore a recording of the meeting is not available. We do have a summary of the meeting provided below and we welcome you to download and learn more about our listening session. This summary is also listed on the FDA website at: https://www.fda.gov/patients/learn-about-fda-patient-engagement/patient-listening-sessions
Our hope is that the FDA will be able to use knowledge gathered from this meeting to shape targets and quality of life measures for potential therapies in the future.