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.
An extremely valuable source of support for FLC patients is finding a mentor who has already been navigating their own journey with the disease. Thanks to the efforts of many fibrolamellar community members including Tracy Oeltjenbruns and Melissa Findley, FCF has launched a “FibroConnect” program that brings one-on-one mentorship support to individuals impacted by this disease. FibroConnect aims to connect cancer fighters, survivors, caregivers and family members with experienced fibrolamellar mentors.
Click here to learn more about the program, to sign up to be matched with a mentor, or to become a mentor.
FCF Patient & 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 among the patients, families, and FCF “staff” have provided strength to many. While the fall 2020 gathering had to be cancelled because of the COVID-19 crisis, our most recent in-person gathering was held in Stowe, Vermont on September 17 – 19, 2021.
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.
The Virtual Fall Gathering – 2020 was the first of many on-line events that the Foundation sponsors for the community. Please visit our events page to learn about our upcoming offerings. Many recordings of past events can also be viewed on FCF’s YouTube channel.