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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:

  • Jackson Watkins, 6th Grader at St. Edwards the Confessor in Dana Point, California, spoke to his entire school and administration about the important of Rare Disease. Jackson initiated a 'Change for Change' fundraising program that took place on campus and personally raised over $700 dollars.
  • Learning Express, a specialty toy store located in Reno, Nevada, offered a week full of fun filled events at the store and had numerous giveaways. Throughout the week, families with Rare Disease such as Niemann Pick Type C and Fragile X were interviewed by local media
  • Smoothie King, Aliso Viejo, CA sold hundreds of smoothies, and will continue the program weekly at Don Juan Middle School because of it's success
  • University of Scranton Education Department conducted bake sales throughout the campus
  • Albany High School, Albany, CA and Pastime Hardware in El Cerrito, CA, teamed up on a 'Change for Change' campaign raising over $250.
  • CureDuchenne.org worked with Pegasus, Huntington Beach, CA with an awareness and education campaign impacting hundreds of children and their families
  • Harbour Surfboards, Seal Beach, CA, conducted their own 'Change for Change' campaign and matched dollar for dollar, all monies donated.
  • St. John Episcopol, Ladera Ranch, CA led by Kennedy Solomon and numerous primary and secondary schools throughout the country collected spare change, with the 'Change for Change' campaign
"It's commitments from children like Jackson Watkins, Kennedy Solomon, Julian Levine and organizations like Learning Express that made our first national effort to raise awareness for Rare Disease an overwhelming success," said Boice. "With this simple initiative we were able to educate countless people about Rare Disease who may have never encountered this type of information before. This is critically important because we need new champions outside the Rare Disease community to support our cause."

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.

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Read the full story at http://www.prweb.com/releases/2009/03/prweb2224674.htm.


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