Rare Disease Facts
What is a
RARE DISEASE?
In the Unites States, 25 million people suffer from rare disease.
Globally, close to 400 million people suffer from a rare disease.
Number of rare diseases: 10,000+
1 in 10 people will suffer from a rare disease at some point in your life
1 in 2 Rare Diseases Don’t Have a Foundation or Research Support Group
1 in 2 Patients Diagnosed with a Rare Disease is a Child
8 in 10 Rare Diseases are Caused by a Faulty Gene
3 of 10 Children with a Rare Disease Won’t Live to See Their 5th Birthday
IMPACT
RARE Diseases Impact More People Than Cancer and AIDS Combined
95%
95% of Rare Diseases Lack an FDA Approved Treatment
8 YEARS
The Average Time it Takes for Rare Patients to Receive an Accurate Diagnosis (on average 8-10 different physicians consulted)
Financial Burden on Families
37% borrow money
53% access personal savings
34% seek support from charities
50% (approximately) of rare diseases do not have a foundation supporting them
Collectively, the personal burdens of those with rare diseases impose a significant economic cost on the nation. When quantifying the health care expenses for people with rare diseases, we found that they have three to five times greater costs than those without rare diseases [I]. In the United States, the total direct medical costs for those with rare diseases is approximately $400 billion annually, a figure validated independently by the EveryLife Foundation for Rare Diseases. The EveryLife study also included indirect and non-medical costs, resulting in a higher total economic burden of nearly $1 trillion annually [2].
