Children, Schools and Businesses Nationwide Team Up To Support The Project--The Children's Rare Disease Network™
Laguna Woods, Calif. (PRWEB) March 11, 2009 -- Children, businesses, schools and organizations from states all across the country including California, Nevada, Pennsylvania and Wisconsin teamed up on February 28, 2009, for World Rare Disease Day to call attention to the serious global public health issues facing millions of American suffering from Rare Diseases. More than 500 individuals, organizations and companies signed on as partners to support The Project - The Children's Rare Disease Network™ and the larger coalition of organizations supporting the special global observance.
"We are sincerely grateful to the countless people and businesses that supported our advocacy driven fundraising and awareness activities this year," said Nicole Boice, founder and CEO of The Project - The Children's Rare Disease Network. "This is an important first step to building greater global awareness of Rare Disease which often carries life-threatening diagnosis for millions of children. We are already actively working towards innovative awareness campaigns for 2010."
According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting nearly 30 million Americans and countless others around the world. Approximately 1 in 10 American's suffer from what is termed Rare Disease with children representing a large percentage of the Rare Disease cases.
Grassroots Mobilization: Collecting Change, Bakes Sales, Toy Raffles, Giveaways
In the week leading up to World Rare Disease Day 2009, a number of fundraising and awareness events were held by Rare Disease Advocates. Some of the activities and events included:
Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Approximately 80 percent of rare diseases are not acquired; they are inherited and are caused by mutations or defects in genes. Rare diseases often have deadly consequences or leave 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.
About The Project - The Children's Rare Disease Network
The Project - The Children's Rare Disease Network is a non-profit organization that assists in the fight against children's rare disease. The mission and promise of The Project is to build a collaborative communication environment providing connections between patients, families, physicians and the scientific community. The Project will aggregate current information and efforts related to rare disease into a seamless portal, enabling all of those affected by rare disease, to easily receive the support and resources they need. The network will also work to create greater public awareness related to children's rare disease and its impact on society. For more information regarding The Project's efforts, to make a donation, contact info (at) theprojectcharity (dot) org or visit www.theprojectcharity.org.
Read the full story at http://www.prweb.com/releases/2009/03/prweb2224674.htm.
Copyright©2009 Vocus, Inc.
All rights reserved