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 …
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 …
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.
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In this study published in Cell Reports, FCF-funded researcher Praveen Sethupathy and his team at Cornell University have leveraged a novel genomics technology to uncover therapeutic vulnerabilities in fibrolamellar carcinoma. Collaborators on the study include FCF-funded John Scott and F. Donelson Smith at the University of Washington. The lead author is Tim Dinh, who recently …
April 21st was a red letter day for the fibrolamellar community. A patient at the Sidney Kimmel Comprehensive Cancer Center of Johns Hopkins University, Baltimore, MD received the initial treatment of the first experimental therapy aimed to directly target the primary molecular cause of fibrolamellar carcinoma (FLC)…