LQTS & CPVT Externally-Led Patient Focused Drug Development Meeting (EL-PFDD)

“Patient-focused drug development (PFDD) is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation. … As experts in what it is like to live with their condition, patients are uniquely positioned to inform the understanding of the therapeutic context for drug development and evaluation.”
In June of 2024, we will be meeting with the US Food and Drug Administration, medical product developers, health care providers, and federal partners about the urgent need for new and improved treatments for LQTS and CPVT.
The purpose of this meeting is to inform the FDA, researchers, and biopharma companies about the experience of living with LQTS and CPVT; it’s focused on the voices of those who have been so profoundly affected by these conditions - meaning, YOU and your family!
We will have lots of exciting announcements upcoming about ways to participate in this meeting, which will include live discussion panels with LQTS and CPVT patients and caregivers, pre-recorded stories from patients living with these conditions as well as live remarks from experts and FDA staff.
For now, here are two ways to get involved in this meeting:
Pre-register to join live in June and tell the FDA about your experience.
Support this meeting - which costs $100,000 for us to put together. This is the only opportunity of its kind for this once-in-a-lifetime meeting; that means you have ONE CHANCE to be one of the donors that allowed us to show FDA and other stakeholders are so critical.