Greenwich, CT – (February 26, 2022) – February 28th is designated Rare Disease Day. Since its launch in 2008 by the National Organization of Rare Disorders (NORD), Rare Disease Day focuses attention on the fact that more than 30 million Americans, one in every 10 people, have been diagnosed with a rare disease, and less …
Greenwich, CT – (February 24, 2022) – The Town of Greenwich will grant an official proclamation of February 24, 2022 as Rare Disease Awareness Day with a presentation by Greenwich First Selectman Fred Camillo at Greenwich Town Hall Thursday at 2pm. Camillo will present the formal designation of Greenwich Rare Disease Awareness Day to local …
Greenwich, CT – (Sept. 28, 2021) – Over 25% of all diagnosed cancers are considered rare. And few have any standard of care, or curative therapies. On this year’s Rare Cancer Awareness Day (#RareCancerDay), September 30th, one rare cancer foundation, Fibrolamellar Cancer Foundation, is showcasing how working together can create a loud impactful noise and …
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 …
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. …
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 …