Global Genes - Allies in Rare Disease
Global Genes - Allies in Rare Disease is a worldwide rare disease awareness movement designed around a denim jeans theme and a blue denim Genes Ribbon™, which like the pink ribbon for breast cancer, has become the unifying symbol of hope for people and families touched by rare diseases. Global Genes uses a simple concept of "jeans and genes" to broadly promote the needs of the rare disease community. The organization's mission is simple: to eliminate the challenges of rare disease. It does this through raising awareness, providing public and physician education, building community through social media, and funding research to find treatments and cures.
Started in 2009 by leading rare disease patient advocates, Global Genes has launched a number of innovative rare disease awareness campaigns including, Hope. It's In Our Genes™, Wear That You Care™, 7,000 Bracelets of Hope™, the Undiagnosed Patient Program, RARE Webinars™, RARE Meetups, the annual RARE Patient Advocacy Summit and the Tribute to Champions of Hope Gala to represent the 7,000 rare diseases and unite 1 Million For Rare. The organization has gained widespread recognition for its innovative campaigns and annual involvement in promoting Rare Disease Day.
Rare diseases affect 1 in 10 Americans, 30 million people in the United States, and 350 million people globally. While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and cancer communities combined. Over 7,000 distinct rare diseases exist and approximately 80 percent are caused by faulty genes. The National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.
It is estimated that 95% of all rare diseases do not have a single FDA approved drug treatment, and there are currently less than 400 treatments approved by the FDA for the approximately 7000 rare diseases which have been identified.
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