Global Genes Project

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The Global Genes Project is a worldwide rare disease awareness movement designed around a denim jeans theme and a blue denim Genes Ribbon™,[1] which like the pink ribbon for Breast Cancer, has become the unifying symbol of hope for people and families touched by rare and genetic diseases. The Global Genes Project uses a simple concept of "jeans and genes"[2] to broadly promote the needs of the rare disease community. The organization's mission emphasizes increasing rare disease awareness, public and physician education, building community through social media and funding research to find treatments and cures.

History[edit]

Started in 2009 by leading rare disease patient advocates, the Global Genes Project has launched a number of innovative rare and genetic disease awareness campaigns including, Hope, It's In Our Genes™, Wear That You Care™, 7,000 Bracelets of Hope™ 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.[3][4]

Rare Diseases[edit]

Rare and genetic 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.

References[edit]

  1. ^ "Rare Disease Day spotlighted Monday". Orange County Register. February 26, 2011. Retrieved 24 August 2012. 
  2. ^ "They'll be wearing Jeans for Genes". NorthJersey.com. February 24, 2012. Retrieved 24 August 2012. 
  3. ^ "RemedyMD and the Children’s Rare Disease Network Announce Plan to Give Away Free Rare Disease Research Registry Valued up to $50,000 via Contest". February 25, 2011. Genetic Engineering & Biotechnology News. Retrieved June 6, 2011. 
  4. ^ "Shire Lends Support to World Rare Disease Day 2011". February 28, 2011 (The Wall Street Journal). February 28, 2011. Archived from the original on May 26, 2011. Retrieved June 6, 2011. [dead link]

External links[edit]