updated 02/08/2013 9:15AM
Global Genes kicks off awareness events
The Global Genes Project, an Aliso Viejo-based patient advocacy group for rare and genetic diseases, has launched a month-long campaign leading up to the sixth annual World Rare Disease Day on Feb. 28.
Rare and genetic diseases affect 1 in 10 Americans, and the National Institutes of Health estimates that half the people that are affected are children. More than 7,000 distinct diseases exist; most of these diseases, including cystic fibrosis and Down syndrome, are caused by genetics. There are no known cures for genetic diseases.
The Wear That You Care campaign is simple and effective in bringing awareness to these diseases. A supporter can wear the Blue Denim Genes Ribbon, which has become synonymous with the group, and a favorite pair of blue jeans. Thousands of advocates have already signed on to participate.
"The vast majority of rare and genetic diseases have small patient populations, and many organizations don't have ribbons to represent their specific rare or genetic disease," said Nicole Boice, president of the Global Genes Project. "Our movement helps unify a fractured community of thousands of small diseases and millions of people who have not had a collective voice. Together we can gain the momentum and exposure needed to influence changes that can lead to lifesaving research and treatments for people with rare and genetic diseases."
As part of the awareness campaign, supporters can submit photos to the Global Genes Facebook page or Instagram, and Tweet using the hashtags #WearThatYouCare and #CareAboutRare.
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