PATIENT AND VCP FAMILY EVENTS
Patient Happy Hours
These Zoom meetings are a way to connect with VCP families around the world and share experiences. There is no agenda or drink required.
Because we have members all over the world, we offer two separate happy hours each month, typically on the second Wednesday and Saturday at 8:00 Eastern Time.
Million Dollar Bike Ride
Cure VCP Disease sponsored a team to ride in the 7th Annual Million Dollar Bike Ride on Saturday, June 13, 2020. In the past, this event was held in Philadelphia, Pennsylvania, but this year the ride was virtual with each rider biking in their own town, either individually or in a small group. The event is hosted by the Penn Medicine Orphan Disease Center (ODC) to raise money for rare disease.
Team Cure VCP Disease is one of 39 teams participating and rode over 700 miles to raise awareness for our rare disease. More Information>
VCP Scientific Focus Group
Scientists interested in investigating p97 / VCP are encouraged to join our VCP Scientific Focus Group which meets monthly. Leading international researchers from 20 top institutions discuss their current research and collaboration. Participation in this group is by invitation only. Contact us at email@example.com for more information.
FDA 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. More Information >