Greenwich Sets Town’s First Ever Rare Disease Awareness Day

GREENWICH, CT — Town officials have declared Feb. 26, 2020, Greenwich's first "Rare Disease Awareness Day." In observance of this, an event featuring speakers and educational awareness activities will be held at Town Hall from 2 p.m. to 3 p.m.

Rare Disease Awareness Day was launched in the U.S. by the National Organization of Rare Disorders, according to a statement from the town.

"One in every 10 people has a rare disease," First Selectman Fred Camillo said in a statement. "I'm proud that our town has numerous organizations that are taking leadership roles in the fight to raise awareness and gain more research interest to fight these often-lifelong debilitating diseases."

Camillo noted that Rare Disease Day is also personal for his family, as his sister, Donna Marie, lost her young life to a rare form of pediatric leukemia.

"Global foundations like the Chan Zuckerberg Initiative (CZI) are joining the rare disease fight with their newly formed Rare As One Network, which is creating greater hope for rare diseases," John Hopper, President of the Greenwich-based Fibrolamellar Cancer Foundation said in a statement.

This month, FCF was chosen as the inaugural cancer foundation to be awarded the CZI Rare As One Network Grant.

"This high-profile support is a true game changer for fibrolamellar-a rare, extremely aggressive liver cancer that attacks adolescent and young adult with an alarmingly low five-year survival rate, and with no curative therapies at this time," Hopper said.

Mark Carles, a 25-year-old fibrolamellar cancer patient, will be at the Greenwich proclamation event and share details of his current fight to beat this rare disease.

"A disease is rare if it affects less than 200,000 people in the United States. As many as 30 million Americans live with a rare disease and more than 60% of these patients are children," NORD Rare Action Network State Ambassador Lesley Bennett said in a statement. "Over 90 percent of these diseases are still without FDA-approved treatments, which makes it so important that communities like Greenwich play an important role of raising awareness and support."