DANA POINT, Calif., Jan. 26, 2011 /PRNewswire/ -- Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their support for the millions of people suffering from rare diseases and disorders. According to statistics from the National Institutes of Health (NIH), there are approximately 7000 different rare diseases that together affect over 25 million Americans and about 250 million people globally. It is estimated that 80% of rare diseases are caused by gene defects, and according to the Kakkis EveryLife Foundation, 95% of rare diseases do not have any FDA approved drug treatments. Since the Orphan Drug Act was enacted 28 years ago in January 1983, only 352 new drugs have been approved by the FDA for all rare diseases combined despite incentives by the federal government.
The Global Genes Project (www.globalgenesproject.org), a leading nonprofit rare disease advocacy organization, today announced the "Wear That You Care™" Denim Campaign in support of Rare Disease Day 2011 and to call attention to the global drug development crisis facing millions of people afflicted with rare diseases. The "Wear That You Care™" Denim campaign is simple — all across the world people can participate in supporting the rare disease movement on Rare Disease Day 2011 by wearing a Denim Jeans Ribbon™ and their favorite pair of jeans — also known as vaqueros, cowboybuksers, niuzaiku, farmernadrag and dungarees in other countries.
"Spurring development of new treatments for thousands of rare diseases is one of the most pressing health care challenges we face in the world today," said Nicole Boice, Founder, Global Genes Project. "The goal of our effort is to create synergy among all constituents committed to finding treatments for the millions of people living with rare diseases and to educate the public on how genetics can influence their health or lead to chronic or life threatening diseases."
Since the launch of the Global Genes Project and Hope – It's In Our Genes™ awareness campaign in February 2010, more than 150 leading corporations, organizations, hospitals and nonprofits have signed up to support rare disease awareness and educational efforts. Organizations that recently joined the effort include: Angelman Syndrome Foundation, Batten Disease Support and Research Association (BDSRA), Biotechnology Industry Organization (BIO), Children's Hospital Research Center Oakland, Healthline, Illumina, Medpedia, MLD Foundation, National Society of Genetic Counselors, Pfizer, Progeria Research Foundation and RemedyMD. The Global Genes Project has also added new supporters from China, Serbia and Turkey.
"Many rare disease foundations are starting to understand our core message -- we're all in the same boat when it comes to drug development for our individual rare diseases and there are few options in sight for millions of people," added Boice. "It's time to band together to make our voices heard and to push for major legislative initiatives that provide novel incentives to researchers and industry so they will invest the time and capital needed to develop new treatments."
A number of "Wear That You Care" denim awareness events are currently being organized around the world and hundreds of volunteers, coordinated by the Global Genes Project, are working on a multitude of outreach activities leading up to Rare Disease Day 2011. Some of the events and activities in progress for Rare Disease Day 2011 are as follows:
For more information on how to get involved and support Rare Disease Day 2011 in your local community or to get your Denim Jeans Ribbon™, visit the Global Genes Project at www.globalgenesproject.org.
About The Global Genes Project
The Global Genes Project is a leading nonprofit rare disease advocacy organization that educates the public about the prevalence of rare diseases worldwide. To see our full list of supporters, visit http://www.globalgenesproject.org/sponsors.php.
|SOURCE The Global Genes Project|
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