Virtual registration is still open for FCF’s second Fibrolamellar Patient & Research Summit to be held on Sunday, June 9 through Monday, June 10 in Greenwich, Connecticut. This summit is meant to be a collaborative working session in which fibrolamellar patients, caregivers, clinicians and researchers discuss the current state of FLC research, share perspectives, and …
Below is a discussion of the implications of recent research efforts on future FLC immunotherapy treatments as summarized by Mark Furth …
FCF is pleased to announce that it has awarded a grant to Sean Ronnekleiv-Kelly, MD of the University of Wisconsin-Madison School of Medicine to determine if targeting CDK7 could be a useful treatment approach for FLC. A group of proteins called cyclin-dependent kinases (CDKs) help regulate cell division and other fundamental cellular processes. Previously, Dr. …
Patients living with a rare disease have to manage many unique challenges. Included in those is what happens to college and career plans during treatment. That’s why the EveryLife Foundation for Rare Diseases established the #RAREis Scholarship – a program that provides support for the educational pursuits of rare disease patients. Under this program, The …
Every year, the first week of April is Adolescent and Young Adult (AYA) Cancer Awareness Week. This annual awareness effort is an opportunity to focus on the unique challenges facing teen and young adult cancer patients and survivors. According to the National Cancer Institute, nearly 86,000 individuals in the United States between the ages of …
The U.S. Department of Defense has asked FCF to help to recruit community members to serve as consumer reviewers for the Peer Reviewed Cancer Research Program …
FCF is please to announce that in-person and virtual registration is now open for FCF’s second Fibrolamellar Patient & Research Summit to be held on June 9-10, 2024 in Greenwich, Connecticut. This summit will be a collaborative working session involving fibrolamellar patients, caregivers, clinicians and researchers. The key goals of this event will be to: …
Rare diseases, also known as orphan diseases, affect a small percentage of the population. In the US, diseases that affect fewer than 200,000 people per year are considered rare. While each rare disease only affects a small percentage of the population, collectively, “rare” is not rare. With over 7,000 rare diseases, nearly 1 in 10 …
In the attached video, Mark Yarchoan, MD and Marina Baretti, MD of Johns Hopkins University discuss the launch of a new clinical trial specifically for fibrolamellar patients that leverages the recently-identified “glutamine addiction” of FLC tumors. The trial, named “DRP-104 (Glutamine Antagonist) in Combination With Durvalumab in Patients With Advanced Stage Fibrolamellar Carcinoma” is now …