Rare Disease Research Center

Providing exceptional solutions for rare disease clinical trials

About Rare Diseases

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 5. 
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.


Rare Diseases

30 Millions

Affected Americans


Approved Treatments


You or your child’s participation in our research is voluntary, and you are free to withdraw at any time. There will be no penalty or loss of benefits to which are you are otherwise entitled. We may be able to compensate you for your time and travel. Please do not hesitate to call us or send a message. We'll be happy to answer your questions and tell you more about our research.

Duchenne Muscular Dystrophy
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Spinal Muscular Atrophy
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Pediatric Epilepsy
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For more information about available research studies or
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