February 28th will mark the sixth annual Rare Disease Day which is meant to raise awareness for rare diseases and improve access to treatment and medical representation for patients and their families. The first observance was on February 29th, 2008, and was chosen because it was a "rare day." In 2009, Rare Disease Day went global with participation from patient advocacy organizations in the United States, China, Australia, Taiwan, and Latin America. More than 60 countries and regions worldwide are now involved in planning awareness-raising activities.
Rare Disease Facts
- In the U.S., a rare disease typically affects a patient population estimated at fewer than 200,000
- There are more than 7,000 rare diseases affecting an estimated 30 million people in the U.S., and more than 300 million globally
- Almost 1 in 10 Americans is affected by a rare disease
- Approximately 80% of rare diseases are genetic
- The National Institutes of Health (NIH) estimates that 50% of the people affected by rare diseases are children
- While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined
- Only 15% of rare diseases have organizations or foundations providing support or driving research
- An estimated 95% of all rare diseases do not have a single FDA approved drug treatment
The Global Genes Project
The Global Genes Project is a non-profit organization led by Team R.A.R.E and R.A.R.E. Project, and aims to raise awareness for people and families touched by rare and genetic diseases. What began as a grassroots movement has now expanded into 500 organizations worldwide.