*Facts & Statistics About Rare Diseases
There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day.
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear.
Approximately 50% of the people affected by rare diseases are children.
30% of children with rare disease will not live to see their 5th birthday.
According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment.
* The Global Genes Project,