TO MEMBERS OF THE FIBROLAMELLAR PATIENT AND CAREGIVING COMMUNITY DURING THIS TIME OF COVID-19
The emerging COVID-19 pandemic has created unprecedented global challenges. We know that for individuals with underlying conditions, including cancer, the situation may seem fraught with uncertainty. We urge patients and caregivers to reach out to their medical care teams for up-to-date information. With our fervent wishes for your health and safety.
BIG NEWS – Chan Zuckerberg Initiative Awards FCF First Ever Rare As One Network Grant
The Chan Zuckerberg Initiative (CZI) announced that the Fibrolamellar Cancer Foundation (FCF) is among a select group of patient-led rare disease organizations, including rare cancer foundations, to receive the first CZI Rare As One Network grant. Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, CZI is committing $13.5 million to the Rare As […]
Fibro community review grants for Department of Defense
Big thanks to Jenny Carroll, Jennifer Strickland and all in the FLC community who participated in the 2019 Department of Defense grant reviews. Since liver cancer has been an approved cancer for DOD funding, Fibrolamellar has been awarded over $2 million in support. So the effort is paying out in a major way. We need […]
Free treatment and clinical trial access.
Did you realize the National Cancer Institute offers free consultation, treatment and travel for fibrolamellar (FLC) patients? Dr. Tim Greten, MD spearheads the NCI’s fibrolamellar efforts and is available to speak with anyone in our community interested in learning more. Besides offering tailored treatment for each patient per consultation, there are also two clinical trials […]
2019 FCF Scientific Conference
Nearly 80 members of the fibrolamellar scientific community – USA and international- gathered in Greenwich, CT in early November to share their research, discoveries and hopes for curative therapies. Importantly those attending embrace collaboration and data sharing – even if their research is not published -knowing that working together, versus silos, is the best way […]
Social Security Agency Expands Compassionate Allowance List
Nancy A. Berryhill, Acting Commissioner of Social Security, announced five new Compassionate Allowance conditions: Fibrolamellar Cancer, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS), Megalencephaly Capillary Malformation Syndrome (MCAP), Superficial Siderosis of the Central Nervous System, and Tetrasomy 18p. Compassionate Allowances is a program to quickly identify medical conditions and serious diseases that meet Social Security’s standards for […]
Fibrolamellar Research Collaboration Travel Fund
The Fibrolamellar Research Collaboration Travel Fund has officially launched, following the second international fibrolamellar (FLC) research summit hosted by the FCF. The summit fostered an amazing amount of data sharing and collaborative brainstorming amongst some of the world’s greatest researchers. It was suggested by the attendees that “face-to-face” meetings are significant catalysts to facilitate ongoing […]