February 25, 2010

It's Almost World Rare Disease Day!

World Rare Disease Day is February 28.

In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to statistics from the National Institute of Health (NIH), there are thought to be nearly 7,000 life-threatening and heavily debilitating conditions affecting nearly 30 million Americans (1 in 10 people or 10% of the population). Despite the infrequency of each rare disease, the total number of rare disease patients in the United States is equivalent to the total populations of New York and New Jersey combined.

In the European Union’s 27 member states, it is estimated that rare disease patients make up between 6% and 8% of the total EU population, or between 27 and 36 million people. This is equivalent to the total combined populations of the Netherlands, Belgium and Luxembourg.

Beyond the US and EU, few reliable rare disease statistics exist for other countries. Some alarming statistics that are currently available include:

  • More than half of the 30 million patients in the United States affected with rare disease are children
  • Approximately 15 million Americans have rare diseases for which there still is no approved treatments and no research in progress
  • Approximately 80% of rare diseases are attributed to genetic defects, many which are untreatable and life-threatening
  • In the 25 years since the Orphan Drug Act of 1983 was signed into federal law, the FDA has only approved approximately 350 treatments for all rare diseases combined

The Global Genes Project has been organized to accomplish the following goals:

  • Create greater awareness about the prevalence of rare disease globally and encourage international efforts to eradicate these disorders
  • Educate those within and outside the rare disease community about genetic factors leading to rare disease
  • Provide a unified platform for fundraising for individual rare disease organizations

“World Rare Disease Day is a crucial time for bringing attention to the needs of millions of people with rare diseases,” added Boice. “However, building rare disease awareness should not be confined to a single day. We are encouraging our supporters to organize a ‘Wear Jeans Day’ or fundraising event any day of the year.”

To join the thousands of people who are uniting to raise awareness for rare disease, visit www.globalgenesproject.org.

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