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 …
World Cancer Day is a day to raise awareness of cancer and to encourage its prevention, detection, and treatment. Led by the Union for International Cancer Control (UICC), its primary goal is to support collaborative efforts to significantly reduce the illness and death caused by cancer. The UICC’s theme for World Cancer Day 2024 is …
Over the last few years, a team of investigators at Johns Hopkins University conducted an innovative clinical trial designed to test the potential to induce an immune response against fibrolamellar carcinoma with a FLC-specific therapeutic vaccine. Participants in the clinical trial were given an experimental vaccine containing a peptide (a small segment of a protein) …
FCF is pleased to announce the establishment of a research collaboration with X-Chem, a global leader in DNA-encoded library (DEL) technology. Through the effort, X-Chem will leverage its powerful DEL platform to support drug discovery efforts against fibrolamellar’s difficult-to-drug fusion protein. The hope is that this powerful screening technology can be used to identify potential …