Announcements

The Gregg family and the Northwestern Mutual scholarship opportunity

When childhood cancer strikes, it has a devastating impact on the patients and their families. The cost of treatment can lead to long-term financial challenges, including questions of how to afford higher education. Below is a story about Adam Gregg, a fibrolamellar fighter, and his family that was posted on the web media channel Romper …

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New clinical trial testing nivolumab, 5-FU, and interferon alpha-2b now open

A new clinical trial for fibrolamellar carcinoma (FLC) is now recruiting subjects at the University of Texas M.D. Anderson Cancer Center in Houston, Texas. This phase I/II trial studies the safety, tolerability, and effectiveness of a combination of nivolumab, 5-fluorouracil (5-FU), and interferon alpha-2b (IFN-α2b) for the treatment of fibrolamellar cancer that cannot be removed …

Read moreNew clinical trial testing nivolumab, 5-FU, and interferon alpha-2b now open

FCF launches new series of research-focused virtual events

This month, FCF is hosting the first of a series of research-oriented Virtual Open Houses and expert panel discussions focused on the evolution of research and clinical care in FLC. These events are designed to highlight the breadth of fibrolamellar research activity currently underway at leading academic medical centers throughout the country, and to discuss …

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FCF’s John Hopper discusses rare cancer challenges, including FLC, in NORD podcast

Recently, Jim Palma and John Hopper, co-chairs of the National Organization for Rare Disorders’ (NORD) Rare Cancer Coalition were interviewed for NORDpod, the official podcast of NORD. During this wide-ranging interview, Jim and John discussed discussed the uniqueness of rare cancers, the struggles in the space, and their hope for the future. Click here to …

Read moreFCF’s John Hopper discusses rare cancer challenges, including FLC, in NORD podcast

FCF Virtual Fall Gathering videos available

We thank everyone in the fibrolamellar community who participated in our “Virtual Fall Gathering”, the replacement for our 8th annual Patient and Family Gathering that was cancelled due to the coronavirus crisis. We hope you found the experience useful and informative. Video recordings of the public portions of each session are now viewable on FCF’s …

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FCF board director named Global Genes interim CEO

Global Genes recently announced Craig Martin, Board Director for the Fibrolamellar Cancer Foundation, as Global Gene’s interim CEO. Craig’s leadership in research and patient support for rare diseases has been, and will continue to be a significant benefit to the fibrolamellar community. “This is both an exciting and pivotal time for the rare disease community,” …

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Award recognizes FCF’s leadership in rare cancers

On Friday, October 9, 2020, Fibrolamellar Cancer Foundation’s John Hopper accepted a 2020 National Organization of Rare Diseases (NORD) Rare Impact Award on behalf of the Rare Cancer Coalition (RCC).  This award, the Abbey S Meyer Leadership Award, is one of the highest honors bestowed by NORD for programs that address awareness, education and research funding needs for often ignored …

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