Registration open for Fibrolamellar Patient & Research Summit

FCF is please to announce that in-person and virtual registration is now open for FCF’s second Fibrolamellar Patient & Research Summit to be held on June 9-10, 2024 in Greenwich, Connecticut. This summit will be a collaborative working session involving fibrolamellar patients, caregivers, clinicians and researchers. The key goals of this event will be to:

  • Introduce – bring together representatives of the fibrolamellar community 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 agenda:

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. The schedule for the day is outlined below:

8:30 am – 8:45 am

Conference introduction

8:45 am – 12:05 pm

Session 1: The state of FLC research: progress, principles, and next steps in the search for a non-surgical cure (presentations and panel discussions)

  • Overview of FLC research efforts
  • The promise of immunotherapy to target of the fusion protein
  • FLC-specific treatments and precision medicine
  • Localized/radiotherapy approaches to FLC treatment
  • Research and clinical integration

12:05 pm – 1:05 pm

Lunch and informal discussions

1:05 pm – 2:45 pm

Session 2: Patient and caregiver perspectives (panel discussions)

2:45 pm – 4:20 pm

Session 3: Community action planning (breakout groups, group readouts and discussion)

4:20 pm – 4:30 pm

Meeting summary and next steps


Brainstorming session at the 2022 Summit

Both in-person and virtual participation will be possible. The main sessions will also be recorded to allow community members who cannot attend the event “live” to view the proceedings at a later time.


To attend the event either in-person or virtually, please click here to register.

Unfortunately, in-person attendance is constrained by the capacity of the meeting rooms, so please register as soon as you can to reserve a spot. In addition, FCF is offering some patient and caregiver scholarships to fund attendees’ travel to and from the event. Because those funds are limited, we ask that you apply for travel funding only if you are experiencing a financial hardship.