Announcements

Thank you for helping search for a cure!

We are incredibly grateful to the community of researchers, clinicians, donors and patients who are supporting efforts to discover a cure for fibrolamellar. In spite of the issues caused by the Covid pandemic, highlights of 2021 include: The launch of two clinical trials for FLC The successful (virtual) gathering of over 70 scientists for the …

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Carles brothers celebrate NYC Marathon together

Congratulations to first-time marathon runner David Carles who celebrated his completion of the New York City Marathon Sunday with his brother Mark, a fibrolamellar patient. Mark, along with his critical care medical team, was brought by ambulance from the intensive care unit at New York-Presbyterian Hospital to the finish line of the race, so the …

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FLC article published in OncLive

An article on fibrolamellar carcinoma (FLC) featuring Dr. Mark Yarchoan, a liver cancer specialist and assistant professor of oncology at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, was recently published in OncLive, as part of its “Rare Cancer Series”. The October 21st article, Lessons Learned May Hold the Key for Improving Outcomes in Fibrolamellar Carcinoma, …

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John Hopper co-authors article explaining importance of genomic testing

In a recent article in CONQUER magazine, John Hopper and Jim Palma, Co-Chairs of NORD Rare Cancer Coalition, explain 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 …

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Rare Cancer Day Webinar

John Hopper, President of FCF and co-chair of the National Organization for Rare Disorders’ (NORD) Rare Cancer Coalition, moderated a NORD webinar on Rare Cancer Day – Thursday, September 30. 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 …

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FibroConnect program launched

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 …

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