PSC patients please join!
Please plan to virtually attend the
Date: Friday, October 23, 2020
Where: Virtual Online Meeting
Mission: To inform the FDA, drug developers, and researchers about the disease burden of PSC patients.
What is a PFDD meeting? Patient-Focused Drug Development (PFDD) meetings were developed in response to the FDA’s initiative to incorporate the patient voice throughout the drug development process. The FDA recognizes that, “Patients are experts in what it is like to live with their disease or condition and use of available treatments.” This is a one-time opportunity for our PSC patient voices to be heard by these important stakeholders and let them know why they should focus their efforts on us.
Why is the PFDD meeting important for PSC patients, families, and the FDA? PFDD meetings give the FDA and other key stakeholders, an important opportunity to hear directly from patients and their caregivers about:
- the symptoms that matter most to them,
- the impact the disease has on patients’ daily lives,
- the patients’ experiences with currently available treatments,
- and what they hope for from future treatments.
Who will attend the PFDD meeting? The FDA, drug developers, clinicians, and other researchers will be there to hear what the PSC community has to say. We want the FDA to experience the commitment of our patient community in order to understand the urgent need for treatments and an eventual cure for PSC. Attendance numbers matter! We invite and encourage PSCers from around the world to attend the meeting virtually! That means we hope Canadian PSCers will bring their voices to this meeting! PSC Partners Canada is very involved in the planning and President Mary Vyas will be one of the moderators.
In what ways can you participate? Attendance numbers matter! We invite and encourage PSCers from Canada and around the world to attend the webcast!
- Attendees can submit comments online to the FDA during the open comment period of the event.
- Even if you don’t want to speak, being a part of the virtual audience is important to show the strength of our community.
- We hope all attendees will participate in audience polling during the event.