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 rare disease organizations, including Greenwich-based Fibrolamellar Cancer Foundation (FCF), that are striving to build awareness and support for research into treatments for the over 7,000 known rare diseases.
The event at Town Hall, will include a presentation of the official town proclamation by Camillo, followed by brief updates from:
- Lesley Bennett: Connecticut state ambassador NORD Rare Action Network
- John Hopper: President Fibrolamellar Cancer Foundation; Co-Chair NORD Rare Cancer Coalition
- Gregg Pauletti: Chair-Golden Lights Foundation
- Phil Marella: Co-Founder/Trustee Dana’s Angels Research Trust
- And several other locally based rare disease foundations
Camillo explained the importance of the awareness day, “One in every 10 people has a rare disease. Our town has numerous organizations that are taking leadership roles in the fight to raise awareness for rare diseases. It is more important than ever to share the critical issues faced by all of the patients, families, medical professionals, and organizations affected by the ability to access diagnosis and treatments, and to accelerate research to fight these debilitating diseases.” Camillo has a personal connection to rare disease day as his sister Donna Marie lost her young life to a rare form of pediatric leukemia.
John Hopper, President of FCF, said, “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. Over 90% of rare diseases, including adolescent/young adult cancers like Fibrolamellar, are still without FDA-approved treatments, which makes it so important that communities like Greenwich play a role of raising awareness and support.”
“Rare Disease Awareness Day, which was launched in the U.S. by the National Organization of Rare Disorders (NORD), is celebrated across the globe during the last week in February. The day brings much needed attention to the diseases that are under-researched and often overlooked by health policy decision makers and the medical community,” notes Lesley Bennett. “By publicizing the experiences of those living with rare diseases and calling on policymakers to focus on the rare disease community’s needs, Rare Disease Day is trying to improve equitable access to diagnosis, treatment and services for all those who are afflicted with a rare disease.”
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.
About Fibrolamellar Cancer Foundation:
FCF, a public 501c3 nonprofit organization based in Greenwich, CT, 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. FCF has funded over $9 million in research across more than 24 major institutions in the U.S. and internationally. 100% of all donations go towards research. All FCF’s overhead and administrative costs are paid by the Charles A. and Marna Davis Foundation and Stone Point Capital. For more information, visit www.fibrofoundation.org and also interact with us on our social media channels: Facebook, Twitter and Instagram.