Announcements

Virtual research series graphics

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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Join our Virtual Holiday Gathering

Please join FCF and your fibrolamellar family and friends on December 21, 2020 at 7:30 pm EST to spread some holiday cheer! All fibrolamellar patients and caregivers are welcome to stop by to say hello to your friends and listen to music featuring Glenn and Oria Alexander. Enjoy a hot cocoa, or cocktail, and wear …

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Fibrolamellar patient community helps review DOD grants

FCF would like to extend a special thank you to Jenny Carroll, Ben Saksa, and Linda Spink who participated in the 2020 Department of Defense grant review process this fall. Each of these members of our community volunteered to be a consumer advocate for the Congressionally Directed Medical Research Programs’ (CDMRP) Peer Reviewed Cancer Research …

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Donate to FCF while shopping this season

Many of us shop at Amazon for a wide range of products. Did you know that the Fibrolamellar Cancer Foundation can benefit from each purchase you make at no additional charge to you? AmazonSmile is a simple and automatic way for you to support FCF when you shop on Amazon this holiday season or any …

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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 Rare Cancer Coalition

On Friday, October 9, 2020, the National Organization of Rare Diseases’ (NORD) Rare Cancer Coalition (RCC) received a 2020 NORD Rare Impact Award. 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 cancers, like fibrolamellar.  The Fibrolamellar Cancer …

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NORD sponsors Rare Diseases and Orphan Products Breakthrough 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’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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