Kielan Wilson-Premo, a member of FCF’s Patient & Caregiver Advisory Board, recently shared his perspectives on mental health issues for patients facing a rare disease diagnosis and treatment. On October 17, Kielan served as a panelist for a discussion on “Mental Health and Rare Cancers” at the National Organization for Rare Disorders’ (NORD) annual Rare …
We’re excited to share that FCF has earned a 2022 Platinum Seal of Transparency with Candid. The Platinum Seal of Transparency is the highest level of recognition offered by Candid and GuideStar, the world’s largest source of nonprofit information. To receive the 2022 Platinum Seal, FCF shared important information with Candid that is included in …
Many thanks to Destiny and Bill Haggett, Chansen and the rest of their family for helping to spread the word about the importance of rare disease advocacy on this Rare Cancer Day. Destiny was instrumental in getting Coral Springs and Coconut Creek, Florida to proclaim Sept. 30 as “Rare Cancer Awareness Day” in those cities. …
Thanks to the efforts of of Kielan Wilson-Premo and the rest of FCF’s Patient & Caregiver Advisory Board, we are bringing back …
John Hopper, who has led FCF for the past eight years, has informed us that he plans to retire. Until his retirement, John’s efforts will help accelerate FLC research by identifying potential new funding sources. We are very appreciative of all John has done and are pleased for the support he will provide the Foundation …
The Fibrolamellar Cancer Foundation (FCF) kicks off Rare Cancer Day with a special video created by the fibrolamellar community …
Because of the urgent need for widely available research models of fibrolamellar carcinoma (FLC) to improve our understanding …
FCF is pleased to announce that two of its research partners – Mark Yarchoan, MD of the Johns Hopkins Kimmel Cancer Center and Paul Thomas, PhD of St. Jude Children’s Medical Center have received significant funding from the National Cancer Institute (NCI) for a collaborative fibrolamellar research project. Their initiative “Neoantigen-specific T cell responses for …
Please join us for our new webinar series focusing on the use of precision medicine techniques in rare cancers like fibrolamellar. Traditionally …