Students at Albany High School in Albany, California, are asking classmates, teachers and parents if they can spare some change to help support the first annual World Rare Disease Day, an international event being held February 28, 2009.
About 1 in 10 American’s, or 30 million people in the United States, suffer from what is termed Rare Disease with about 75 percent of cases afflicting children. The goal of World Rare Disease Day 2009 is to raise global awareness of Rare Disease with policy makers and the public and educate people on how rare disease impacts patients and families.
The fundraising effort organized at Albany High School mirrors similar drives at schools and businesses around the country. The students at Albany High School formed the Red Bucket Club to support people fighting rare diseases.
“There’s nothing rare about Rare Disease,” said Nicole Boice, founder of the Global Genes Project. “Rare Disease is touching millions of people around the world and together we must start to make Rare Disease a global public health priority.”
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Approximately 7000 rare diseases have been identified often having deadly consequences or leaving children with severe cognitive impairment and physical disabilities. Because specific diseases may afflict few individuals, they often don’t garner the attention of researchers and pharmaceutical companies. But rare diseases do share many commonalities — from similar symptoms to quality of life issues surrounding raising a child with a rare disease to financial hardship faced by families.
Red Buckets Spare Change Campaign
The week leading up to World Rare Disease Day 2009, Julian Levine and fellow students at Albany High School will carry red buckets donated by Pastime Hardware in El Cerrito, Calif., to collect spare change from classmates.
“When I learned that Rare Disease affect 10 times more people than breast cancer I was shocked,” said Julian Levine, a freshman at Albany High School and organizer of the Red Bucket spare change collection event. “I didn’t understand why Rare Disease hasn’t received much attention and I felt I could do something to help. My goal is to create greater public awareness related to children suffering from rare disease, its prevalence, and the hope that they can help make a difference.”