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 …
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 …
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 …
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,” …
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 …
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 …
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. …
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 …
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 …