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].

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References: [1] The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems. Tisdale A, Cutillo CM, Nathan R, Russo P, Laraway B, Haendel M, Nowak D, Hasche C, Chan CH, Griese E, Dawkins H, Shukla 0, Pearce DA, Rutter JL, Pariser AR. Orphanet Journal of Rare Diseases. 2021 Oct 22; ;16(1):429. [2] The national economic burden of rare disease in the United States in 2019. Yang G, Cintina I, Pariser A, Oehrlein E, Sullivan J, Kennedy A. Orphanet Journal of Rare Diseases. 2022 Apr 12;17(1):163.