Global Genes
Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases. The organization's blue denim "Genes Ribbon",[1] like the pink ribbon for breast cancer, has become a unifying symbol of hope worldwide for patients affected by rare and genetic diseases. Global Genes uses a simple concept of "jeans and genes"[2] to promote awareness of rare disease; its slogan is "Allies in Rare Disease".
The organization's mission is to eliminate the challenges of rare and genetic diseases. It works towards this through raising awareness, providing public and physician education, building community support through social media, and funding research to find treatments and cures.
History
Since its inception in 2009, Global Genes has launched a number of rare disease awareness campaigns including, "Hope. It's In Our Genes", "Wear That You Care" and "7,000 Bracelets of Hope". It runs an Undiagnosed Disease Patient Program, RARE Webinars, RARE Meetups, the annual RARE Patient Advocacy Summit and the Tribute to Champions of Hope Gala.
The organization has gained widespread recognition for its innovative campaigns and annual involvement in promoting Rare Disease Day.[3][4]
Rare diseases
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 have been identified and approximately 80 percent are caused by faulty genes. The US National Institutes of Health estimates that 50% of people affected by rare diseases are children, making rare diseases a major cause of death and disability for children worldwide.
It is estimated that 95 % of all rare diseases do not have a single US FDA-approved drug treatment, and there are currently fewer than 400 treatments approved by the FDA for the thousands of rare diseases which have been identified.
References
- ↑ "Rare Disease Day spotlighted Monday". Orange County Register. February 26, 2011. Retrieved 24 August 2012.
- ↑ "They'll be wearing Jeans for Genes". NorthJersey.com. February 24, 2012. Retrieved 24 August 2012.
- ↑ "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.
- ↑ "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.