FCF hosted its first Fibrolamellar Patient & Research Summit in spring 2022, thanks to the generous support of the Chan Zuckerberg Initiative. We are pleased to hold this event again in June 2024.
This interactive 1 ½ day summit will be a collaborative working session involving fibrolamellar patients, caregivers, clinicians and researchers. It will be an opportunity for the broad FLC community to learn about research and treatment progress, share perspectives and identify opportunities for improvement. The key goals of the 2024 event will be to:
- Introduce – bring together representatives of all key fibrolamellar constituencies to help build mutual understanding among stakeholders
- Educate – communicate and answer questions about the overall FLC research agenda as well as specific research efforts
- Improve – identify issues and potential opportunities the community should address.
Timeframe and structure:
The meeting will begin at 5:00 pm on Sunday, June 9 with a welcome reception, dinner and keynote talks.
Monday, June 10 will be a day-long session running from 8:30 am until 4:30 pm. It will include a series of interactive presentations, panel discussions and round table sessions on important topics. A brainstorming session in the afternoon aims to identify opportunities to improve the fibrolamellar research landscape.
The full agenda can be read here.
Attendance:
Both in-person and on-line participation will be possible for the Sunday keynote and the Monday sessions focused on research and emerging treatments. Those portions of the event will also be recorded to allow community members who cannot attend the event (either in Connecticut or via Zoom) to view the proceedings at a later time. The patient and caregiver panel discussions, as well as the brainstorming session in the afternoon will not be streamed or recorded.
Registration:
In-person registration for the event is now closed.
To attend the event virtually, please click on the links below to register and get log-in information for each session:
- Sunday, June 10 from 8:00 to 9:00 pm ET: Keynote discussion on mental health.
- Monday, June 11 from 8:30 am to 1:15 pm ET: Main presentations and clinical panel discussions.