A recent article in CONQUER magazine explains the differences between genetic testing and genomic analysis, and why patients with rare cancers should have a genomic profile done. The full article, titled “Treating Rare Cancers Can Be Hard: Why Genomic Testing Is Crucial“, can be read here. CONQUER magazine features articles written by and for patients with …
On Thursday, September 30, FCF leadership moderated a Rare Cancer Day webinar sponsored by the National Organization for Rare Disorders’ (NORD) Rare Cancer Coalition. This 45-minute webinar, “Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research“, discusses rare cancer challenges and offers insights to assist those who are impacted. Topics covered include the challenges …
When someone is diagnosed with fibrolamellar carcinoma (FLC), they can feel isolated and alone. 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 is …
Thanks to the efforts of Jenny Carroll, we are bringing back the fibrolamellar calendars for the 2022 year! The calendars, featuring fibrolamellar fighters past and present, are currently being designed. Click here to learn more, to provide pictures to be featured in the calendar, or to reserve your copy.
The University of Colorado Cancer Center recently published the inspiring story of how Ella Neal beat stage IV fibrolamellar carcinoma (FLC). Many thanks to Ella for sharing this account of her fibrolamellar journey and for donating tumor tissue to the FCF BioBank to support research into new FLC treatments. Hopefully, efforts like Ella’s to build …
An announcement by the Princess Máxima Center for pediatric oncology, a center that brings together the complex care and research for children with cancer in the Netherlands, describes a new research effort supported by FCF. In this new study, Benedetta Artegiani will apply her experience researching organoids to determine the role BAP1 plays in fibrolamellar …
Fibrolamellar patients are encouraged to participate in the Natural History Study of Rare Solid Tumors, currently underway at the National Cancer Institute (NCI) in Bethesda, Maryland. The purpose of this study is to better understand how rare solid tumors develop and grow. Natural history studies like this will help researchers learn more about fibrolamellar carcinoma …
Congratulations to Jessica Ellison of Rush University Medical Center in Chicago who was recently named a finalist by the CURE Media Group for their 2021 Extraordinary Healer® Award for Oncology Nursing. This award honors outstanding nurses for their compassion and contributions to oncology care. Jessica Ellison, MSN, RN, CNL is a transplant coordinator at Rush …
In the following article, published by the Greenwich Sentinel on March 19, Marna Davis shares the story of the Fibrolamellar Cancer Foundation. In it, she outlines her son Tucker’s experience with fibrolamellar carcinoma, explains the history and mission of the foundation, and expresses her optimism about the progress that is being made against the disease. …