The Town of Greenwich is formally proclaiming February 26, 2020 as Greenwich’s first Rare Disease Awareness Day, with speakers and educational awareness activities at Town Hall from 2 to 3 p.m. Rare Disease Awareness Day, which was launched in U.S. by National Organization of Rare Disorders rarediseases.org is celebrated across the globe during the last week in February. The day brings much needed attention to the over 7000 known rare diseases that are grossly under-researched and often overlooked by health policy decision makers and the medical community.
The event will feature talks from First Selectman Fred Camillo, Officials from Sen Richard Blumenthal’s office, John Hopper- Co-chair of the national Rare Cancer Coalition and President of Greenwich based Fibrolamellar Cancer Foundation, Lesley Bennett – State Ambassador NORD Rare Action Network and numerous rare disease organizations in the Greenwich area.
“One in every 10 people has a rare disease”, notes Greenwich First Selectman Fred Camillo. “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”. Fred notes that rare disease day is also quite 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” notes John Hopper Co-Chairman of the Rare Cancer Coalition and President of Greenwich based Fibrolamellar Cancer Foundation ( FCF) www.fibrofoundation.org . 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.”
“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” notes Lesley Bennett, Connecticut State Ambassador of NORD Rare Action Network. “Over 90% 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”
About the National Organization for Rare Disorders (NORD):
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Visit rarediseases.org
