Patient Advocacy Teams Help Turn World Rare Disease Day 2009 Into A Glob... ( Children Sch...)

Patient Advocacy Teams Help Turn World Rare Disease Day 2009 Into A Global Success

Date:3/11/2009

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:

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