10 Facts About Rare Diseases that Everyone Should Know

This February 28th 2017 marks the tenth annual Rare Disease Day. It’s a time when we can together sound a clarion call to make sure everyone understands the significance of what it means to live with a rare disorder. This year’s theme is “With Research, Possibilities are Limitless.” Perhaps now more than ever before, we must stand united to preserve critical funding for the development of treatments. It is a costly endeavor, but an essential one. And it is part of our responsibility as a society.

See how many of the following Global Genes rare disease facts you know. 

  • There are about 7,000 known rare diseases and disorders, and more are being discovered every day.
  • In the United States alone, 30 million people are living with rare diseases (that’s 10% of the country’s population).
  • Worldwide, 350 million people are living with rare diseases (of which 30 million are from Europe).
  • If all the people with rare diseases lived in a single country, it would be the world’s 3rd most populated.
  • In the US, a disease is categorized as “rare” if it affects less than 200,000 people.
  • The definition of “rare” varies around the world. In the UK, it is regarded as a condition affecting less than 50,000.
  • Of all known rare diseases, 80% are genetic disorders.
  • Of all of those affected by rare diseases, 50% are children.
  • 30% of children suffering from a rare disease do not live to see their 5th
  • Rare diseases are responsible for 35% of deaths in the very first year of life.

Perhaps one of the most sobering statistics comes from the Kakkis EveryLife Foundation. It reports that 95% of rare diseases have not one single FDA approved pharmaceutical treatment. This is why we must fund research. This is why we must continue to advance science. This is why we must never abandon hope. And this is why we must stand beside those living with rare diseases, not only on February 28th, but every day in which we can help make a difference.

by Jonathan D. Katz