1:10 Americans suffer
from a rare disease
30% born with a rare disease will not live to see their 5th birthday
34% of Americans are inadequately insured, while 9% are completely uninsured
No treatments
95% of rare diseases lack an FDA-approved treatment
One in twenty have treatments
Only 5 percent of rare diseases have treatments
Approximately two-thirds of Americans with rare diseases are children
Rare disease patients experience significantly more anxiety & depression
1 in 2 Rare Diseases don’t have a foundation or research support group
The economic burden of Rare Disease reached nearly $1 Trillion in the US
85% of Rare diseases are genetic
Genetic testing could help diagnose many rare diseases
On average, a rare disease is misdiagnosed 2 or 3 times