February 28th is Rare Disease Day — a worldwide event hoping to improve the lives of the 300 million people worldwide who are living with rare diseases, their families, and their caregivers. Rare Disease Day was launched in 2008 by EURORDIS – Rare Diseases Europe and takes place on the last day of February each year in more …
FCF is pleased to announce that it has awarded a grant to Praveen Sethupathy, PhD, of Cornell University to outline the “spatial transcriptomics” of FLC. Dr. Sethupathy’s lab has been a leader in functional genomic studies, especially for liver and gastro-intestinal cancers. They also have extensive experience in FLC research. His group has focused on …
Major medical breakthroughs can result from translating basic scientific research into practical patient treatments. But how does that happen? …
As a nonprofit, FCF is fueled by donors like you. By supporting FCF this Giving Tuesday, you can play a crucial role in funding the groundbreaking research necessary to find improved treatment options for fibrolamellar cancer patients. In the last 2 years alone, FCF has approved $9.8 million in new FLC research and clinical trials …
Thanks to the efforts of FCF’s Patient & Caregiver Advisory Board, we will be producing fibrolamellar calendars again in 2025!
Deciding to participate in a clinical trial to access a new innovative treatment is an important decision for patients and their families. In a rare disease like FLC, trials specifically designed for the disease are typically offered at very few locations. Consequently, patients enrolling in clinical studies may have to spend many days or weeks …
Marina Baretti, MD of Johns Hopkins University recently provided an update on a clinical trial for fibrolamellar patients that intends to leverage the “glutamine addiction” of FLC tumors. The trial, “DRP-104 (Glutamine Antagonist) in Combination With Durvalumab in Patients With Advanced Stage Fibrolamellar Carcinoma”, is currently open for patient enrollment at the Sidney Kimmel Comprehensive …
We are pleased to announce that FCF has awarded Dr. Juliane Walz of the University Hospital Tübingen a grant to develop and launch a new clinical trial for FLC patients. This phase I study will assess the safety and efficacy of a peptide vaccine (Fusion-VAC-XS15) against FLC’s driver protein in a different clinical context than …
Thanks to the incredible generosity of Stone Point Capital (SPC), tournament sponsors, and participants, this year’s SPC Charity Golf Tournament raised over a million dollars to support fibrolamellar research! Over the years, this annual fundraiser has tremendously impacted FCF’s ability to fund critical research into the disease. At the event, Chuck and Marna Davis discussed …