Announcements

Introducing new webinar series: Precision Medicine for Rare Cancers

Please join us for our new webinar series focusing on the use of precision medicine techniques in rare cancers like fibrolamellar. Traditionally, medical treatments were designed for the “average patient” in a one-size-fits-all-approach, which may be successful for some patients but not for others. Precision medicine, also known as “personalized medicine”, tailors disease treatments to …

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Consumer reviewer opportunities!

The Department of Defense (DOD) is seeking patients and caregivers to act as consumer grant reviewers for two large cancer research funding programs: The Peer Reviewed Cancer Research Program (PRCRP), and The Rare Cancers Research Program (RCRP). Consumer reviewers for these programs work alongside prominent scientists to provide input on how the DOD’s research funds should …

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Chansen’s Rare Disease Day message

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 …

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Thank you for helping search for a cure!

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 …

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Carles brothers celebrate NYC Marathon together

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 …

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FLC article published in OncLive

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, …

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