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 1:00pm, followed by a free public webinar featuring local rare disease foundations (see details below).
Camillo will present the formal designation to John Hopper, President of the Greenwich-based Fibrolamellar Cancer Foundation (FCF), representing one of the over 7000 known rare diseases that are all struggling to amplify the
critical message of awareness this year.
Camillo explained the importance, “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. The current pandemic has challenged the cause greatly. It is more important than ever to share the critical issues faced by all of the patients, families, medical professionals, and organizations effected by the ability to access diagnosis, treatments and accelerate research to fight these debilitating diseases.” Camillo 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.
Rare Disease Awareness Day, which was launched in the US 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 grossly under-researched and often overlooked by health policy decision makers and the medical community. The Covid-19 pandemic has caused difficulty for patients seeking diagnosis, delays and
cancelled treatments, fewer clinical trials, lack of research funding and loss of income.
“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,” said Lesley Bennett, Connecticut State
Ambassador of NORD Rare Action Network in a release. “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.”
As part of the presentation on Friday, a virtual interview with Mark Carles, a 26-year-old fibrolamellar cancer patient, will share his very personal and enlightening story about his life since his diagnosis, and the various challenges he has faced over the last year.
“During the Covid-19 pandemic, NORD reported the top five struggles of the rare community,” said Hopper, who also serves as NORD Co-Chair Rare Cancer Coalition.
These include:
- The inability to conduct or participate in clinical trials
- 79% of patients experiencing canceled medical appointments
- 32% having difficulty accessing medical care and treatment
- 14% with issues accessing medication
- 37% families impacted by a loss of income and 12% of whom can no longer afford medication.
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.
The Fibrolamellar Cancer Foundation, a public 501c3 nonprofit organization based in Greenwich, 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.
The foundation has funded over $8 million in research across more than 24 major institutions in the US and internationally.
All operating costs for the foundation are funded by the Charles A. and Marna Davis Foundation. For more information, visit www.fibrofoundation.org and also interact with us on their social media channels: Facebook, Twitter and Instagram.
Join the webinar:
Rare Disease Day
Friday, February 26 at 2:30pm
Click the link to join: https://us02web.zoom.us/j/83021022608
Or
iPhone one-tap: 13126266799, 83021022608# or 16468769923, 83021022608#
Note: Webinar capacity limited to 100 registrants