In today’s generation, there are a lot of common diseases going around which are extremely scary. However, there is not a lot of light brought upon the several rare diseases which affect different people around the world daily.

What is a Rare Disease?

A disease is considered to be a rare disease when less than 200 000 people in the United States have it. These diseases are called Orphaned diseases. There are about 7000 different types- with that number growing continuously every day. A few of these rare diseases are Morgellons, Fields’ disease, Kuru and Von Hippel-Lindau.

Rare Disease Facts:

According to the Kakkis EveryLife Foundation, 95% have not one single FDA approved drug treatment.

International definitions vary. For example, in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease. In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group.

30% of children with a rare disease will not live to see their 5th birthday.

During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined.

Approximately 50% of rare diseases do not have a disease-specific foundation supporting or researching their rare diseases.

Diseases such as malaria are quite common in some parts of the world but are considered rare in the United States. Other diseases such as Cancer or Alzheimer’s are not rare diseases as a whole, but certain forms of these diseases are considered rare.

If you want to know more about rare diseases and how you can get involved in Rare Disease Day, visit the link here.


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