By Richard Kaufman
This Friday, the Town of Greenwich will grant an official proclamation, declaring Feb. 26 as Rare Disease Awareness Day.
First Selectman Fred Camillo will issue the proclamation to John Hopper, President of the Greenwich-based Fibrolamellar Cancer Foundation (FCF), during a presentation at Town Hall at 1 p.m. Afterwards, there will be a free public webinar on Zoom, featuring local rare disease foundations who will tell their stories.
In an era of COVID-19, this year’s event holds extra 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,” said Camillo.
Camillo noted 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 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 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. “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 pandemic, NORD reported the top five struggles of the rare community,” noted Hopper, who also serves as NORD Co-Chair Rare Cancer Coalition. These include:
1. The inability to conduct or participate in clinical trials
2. 79% of patients experiencing canceled medical appointments
3. 32% having difficulty accessing medical care and treatment
4. 14% with issues accessing medication
5. 37% families impacted by a loss of income and 12% of whom can no longer afford medication
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.
Join the webinar:
Rare Disease Day
Friday, February 26th 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
