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 …
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 …
Read moreRare Disease Awareness Day Critical As Patients Struggle During COVID Times
Greenwich, CT – (February 22, 2021) – The Town of Greenwich will grant an official proclamation of February 26, 2021 as Rare Disease Awareness Day with a presentation by Greenwich First Selectman Fred Camillo at Greenwich Town Hall Friday at 1pm, followed by a free public webinar featuring local rare disease foundations …
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 …
Greenwich, CT – (Sept. 25, 2020) – The Fibrolamellar Cancer Foundation is leading the way to spread the word that September 30th is designated as National Rare Cancer Awareness Day. (#RareCancerDay) Each year, approximately 1.7 million people in the U.S. are diagnosed with cancer. Of those, more than 25% (or 550,000+) are considered rare cancers. …
Read moreFibrolamellar Becomes Lead Example for Rare Cancer Awareness 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 …
Read moreYoung Rare Cancer Patient Speaks Out on National Rare Disease Day
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 …
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 …
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 …
Read moreFibrolamellar Global Summit Determines Research Funding As #GivingTuesday Top Priority