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. This is a closed group, so only those touched by the disease can be part of it. 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.
Another way to share information is through fibroregistry.org. The Registry is dedicated to helping patients advance the research into fibrolamellar by sharing their medical information with researchers and each other.
Since 2012 FCF has sponsored a patient and family gathering. Photo above was taken at the gathering in 2015. The bonds established amongst the patients, families, and FCF “staff” has provided strength to many. FCF will continue to hold this gathering. Notice will be posted both in the announcements on this website and on the FWU Facebook Page of future such events. We encourage you to fill in the form below so FCF knows you are part of this community.