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.
This year, we hope to have an in-person gathering in Stowe on September 17 – 19, 2021, pending the COVID-19 situation at that time. If its not possible to meet in person, we will hold another virtual gathering. Check back for more information!
Notice of future such events will be posted in the announcements and events pages 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.