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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FCF moderates panel with FDA and Broad Institute at NORD summit

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD hosts a variety of events throughout the year, including the Rare Diseases and Orphan Products Summit. This event draws together the top leaders from the FDA, NIH, patient organizations, industry, payers and …

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Liver cancer awareness month

Rare cancer isn’t uncommon: Courtney Homer’s story

The FIbrolamellar Cancer Foundation (FCF) kicks off Rare Cancer Day and National Liver Cancer Awareness month with a story featuring fibro fighter Courtney Homer. Courtney, 27, from Glendale, Arizona, was diagnosed with fibrolamellar in 2014. She taped the following video segment to share her journey since her diagnosis in 2014 when she was only 21. …

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Fibrolamellar becomes lead example for Rare Cancer Awareness Day

Rare Cancer Day is an annual awareness day designed to focus a light on rare cancers and the issues facing people living with them. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges that patients living …

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FCF announces virtual patient and family meeting series

Our 8th annual patient and family gathering has gone virtual! Whether it’s your first year or eighth year attending one of our get-togethers, these events are for you. Click on any of the session dates below to get more details about the agenda and register for the event. For events that already occurred, you can …

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FCF earns a “Give with Confidence” rating

FCF is proud to announce that its strong financial health and ongoing accountability and transparency have earned a 100/100 rating from Charity Navigator’s new Encompass Rating System. This score designates FCF as an official “Give with Confidence” charity, indicating that our organization is using its donations effectively based on Charity Navigator’s criteria. Charity Navigator is …

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FCF/CRI fellowship winner announced

Albert Einstein College of Medicine’s Dr. Francesco Juan Martinez Navarro has been awarded this prestigious three-year fibrolamellar (FLC)  research fellowship. This is the fifth Cancer Research Institute (CRI) fellowship that FCF has funded in the past five years.  Read about Francisco’s important focus to further advance FLC discoveries.