Press Releases

Fibrolamellar Patients And Caregivers Contribute To Research Programs Of The Department Of Defense

Greenwich, CT – (March 25, 2021) – The Fibrolamellar Cancer Foundation would like to thank fibrolamellar patients and caregivers Jennifer Strickland, Jenny Carroll, Ben Saksa, Linda Spink and Kurt Losert who recently served as consumer advocates for the Congressionally Directed Medical Research Programs’ (CDMRP) Peer Reviewed Cancer Research Program (PRCRP) and the Rare Cancers Research …

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Rare Disease Awareness Day Critical As Patients Struggle During COVID Times

Greenwich, CT – (February 26, 2021) – National Rare Disease Awareness Day (RDAD) takes place during the last week of February. This year, the awareness message is even more critical. The pandemic has caused numerous difficulties for rare disease patients, families, and the healthcare community. Major obstacles have included a delay in diagnoses, limited access …

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Rare Cancer Isn’t Uncommon: Courtney Homer’s Story

Greenwich, CT – (Sept. 30, 2020) – Despite how it sounds, a rare cancer diagnosis is not uncommon. In fact, each year when approximately 1.7 million people in the U.S. are diagnosed with cancer, more than 25% of those people will hear the words that they have been diagnosed with a rare cancer.
What is uncommon about rare cancers is a specific treatment …

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Young Rare Cancer Patient Speaks Out on National Rare Disease Day

Greenwich, CT – (February 29, 2020) – Leap Day. The rarest day on the calendar and the most appropriate day to be declared as National Rare Disease Awareness Day.  This is the day, Mark A. Carles, 25, of Staten Island, NY, steps forward to spread the word of awareness to everyone. Carles was diagnosed with Fibrolamellar, an aggressive liver cancer that mostly strikes …

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Chan Zuckerberg Initiative Awards Fibrolamellar Cancer Foundation First Ever “Rare As One Network” Grant

Greenwich, Conn. (Feb. 4, 2020) – 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 …

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October 1st Declared As Rare Cancer Day

Greenwich, CT – (Sept 30, 2019) – October 1st has been designated as Rare Cancer Day. The National Organization for Rare Disorders (NORD)®, spearheaded by its Rare Cancer Coalition, officially tagged October 1st as #RareCancerDay in order to bring attention to the fact that 25% of all cancer diagnosis are considered rare and they are …

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Fibrolamellar Global Summit Determines Research Funding As #GivingTuesday Top Priority

Greenwich, CT – (November 22, 2017) – #GivingTuesday, a global day of giving, arrives just in time to help rare cancers, a desperately underfunded nonprofit category, that has real potential to save lives. At a global summit held earlier this month by the Fibrolamellar Cancer Foundation (FCF), an organization supporting research for a rare form …

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