Many thanks to Chansen Savakinus of Coral Springs, Florida for his help in spreading the word about Rare Disease Day, celebrated on February 28th each year. The day brings needed attention to diseases that are under-researched and often overlooked by health policy decision makers and the medical community. By publicizing rare disease patients’ experiences, Rare …
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…
Several notable organizations, including the Ruth Cheatham Foundation, the Northwestern Mutual Foundation, the National Children’s Cancer Society and Cancer for College are…
We are incredibly grateful to the community of researchers, clinicians, donors and patients who are supporting efforts to discover a cure for fibrolamellar. In spite of the issues caused by the Covid pandemic, highlights of 2021 include: The launch of two clinical trials for FLC The successful (virtual) gathering of over 70 scientists for the …
Congratulations to first-time marathon runner David Carles who celebrated his completion of the New York City Marathon Sunday with his brother Mark, a fibrolamellar patient. Mark, along with his critical care medical team, was brought by ambulance from the intensive care unit at New York-Presbyterian Hospital to the finish line of the race, so the …
Dr. Arfaoui, a postdoctoral researcher at Fred Hutchinson Cancer Research Center in Seattle, WA, was named the second recipient of the Brave Fellowship at Fred Hutch.
An article on fibrolamellar carcinoma (FLC) featuring Dr. Mark Yarchoan, a liver cancer specialist and assistant professor of oncology at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, was recently published in OncLive, as part of its “Rare Cancer Series”. The October 21st article, Lessons Learned May Hold the Key for Improving Outcomes in Fibrolamellar Carcinoma, …
FCF would like to extend a special thank you to Jenny Carroll who participated in the 2021 grant review process this fall as a consumer advocate for the Congressionally
A recent article in CONQUER magazine explains the differences between genetic testing and genomic analysis, and why patients with rare cancers should have a genomic profile done. The full article, titled “Treating Rare Cancers Can Be Hard: Why Genomic Testing Is Crucial“, can be read here. CONQUER magazine features articles written by and for patients with …