About us

In the United States, a rare disease is defined as disease that affects less than 200,000 people.  With 7,000 known rare diseases affecting 30 million Americans and an estimated 350 million people worldwide.  Of those statistics, about 75% of rare diseases are children, and about 30% of patients with rare diseases will not live past the age of 5yr. 
In 1983, the FDA approved The Orphan Drug Act which gives incentives to companies that work to develop treatments for rare diseases. Since then, there have been nearly 350 treatments approved for various rare diseases.