The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.
RARE is Everywhere
Rare and genetic diseases affect 300 million people globally. 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.
World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.
The sixth annual World Rare Disease Day will be held on Thursday, February 28, 2013. (http://globalgenes.org/)
For more information or to get involved in an event, please go to http://globalgenes.org/world-rare-disease-day/
To spread awareness for Rare Disease Day, I would like to highlight a rare disease for the next couple of days....stay tuned!