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Local Rare Cancer Foundation Hosts Gathering of World Experts

Local Rare Cancer Foundation Hosts Gathering of World Experts
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Two Different Rare Diseases Before Age 20: Chansen Savakinus' Rare Disease Day Message

February 28th is designated Rare Disease Awareness Day (RDAD). More than 30 million Americans have a rare disease, but less than 5% of the 7,000+ rare diseases have a FDA approved treatment.

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SMASHFEST Fundraiser Skates Into Stamford

NHL Star Ping Pong Tourney Proceeds Serve Rare Cancers, Concussions. Local Cancer Organization, Fibrolamellar Cancer Foundation and Patients, Take Slap Shot at Celeb Athletes.

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Rare Disease Awareness Day Critical As Patients Struggle During COVID Times

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February 26, 2021 (PRLEAP.COM) Health NewsNational 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 to treatments, and the lack of clinical trials.
Helping to spread the word on awareness is Greenwich, CT- based, Fibrolamellar Cancer Foundation (FCF), a non-profit organization formed to fund research, build awareness and provide patient support for an aggressive liver cancer that strikes teens and young adults who are typically not diagnosed until the disease is in an advanced stage. FCF was founded in 2009 by 27-year-old Tucker Davis, who lost his life to Fibrolamellar on Rare Disease Day in 2010, after an 18-month fight.

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