Connect with Other Patients

Making lanterns at Patient & Family Gathering

A diagnosis of fibrolamellar hepatocellular carcinoma is difficult, not just because of the seriousness of the disease but also because of its rarity. Many fibrolamellar patients and families never knew anyone else with their disease. That has changed both because of this Foundation and thanks to a community of patients and families who are part of a Facebook group called “Fibrolamellars of the World Unite!”.

Key opportunities to connect:

Fibrolamellars of the World Unite! is a closed facebook group that includes only those touched by the disease.  We encourage all newly diagnosed patients and their families to join. Just go to facebook, type in the group name and request to be included.  An administrator for the group will get back to you quickly.

FCF Patient and Family Gathering

Since 2012, FCF has sponsored an annual patient and family gathering. The photo above was taken at our gathering in 2016.  The bonds established amongst the patients, families, and FCF “staff” has provided strength to many.  FCF will continue to hold this gathering, but unfortunately the face-to-face fall 2020 gathering had to be cancelled because of the covid-19 crisis. Notice of future such events will be posted in the announcements and events areas of this website as well as on the FCF facebook page.  We encourage you to register on our site so FCF knows you are part of this community.

Interactive Events

The Virtual Fall Gathering – 2020 was the first of many interactive on-line events that the Foundation will be sponsoring for the community. Click here to view video summaries of that series of four events. Also please visit our events page to learn about our future offerings.

Fibrolamellar Forum (coming soon!)

Visit our brand new Fibrolamellar Forum when it opens this fall! Share your experiences, ask questions to the community and help us plan key initiatives.