NewsNationalScripps News

Actions

Nearly 30 million Americans are impacted by a rare disease

This year, Rare Disease Day is being recognized on Feb. 29, or leap day.
Nearly 30 million Americans are impacted by a rare disease
Posted at 3:56 PM, Feb 29, 2024
and last updated 2024-02-29 17:19:48-05

Rare diseases impact nearly 30 million people in the United States, according to the National Institutes of Health.

This is nearly 10% of the population, or approximately 1 in every 10 people.

A rare disease is defined as one that affects fewer than 200,000 people in the U.S, according to the NIH.

Feb. 29 is Rare Disease Day, observed on the leap day this year because it’s the rarest date and only happens every four years.

SEE MORE: FDA approves first gene therapies to treat sickle cell disease

There are an estimated 10,000 rare diseases, and most are difficult to diagnose. They range from sickle cell anemia to cystic fibrosis, for example.

Only about 500 of these diseases have FDA-approved treatments.

2021 study by NIH found that the average yearly direct medical costs estimated for everyone in the U.S. with a rare disease would total approximately $400 billion.

This is similar to the annual direct medical costs for cancer, heart failure, and Alzheimer’s disease combined.

This day is a day to raise awareness of those who have rare diseases and the challenges they face.

Rare Disease Day was first observed in 2008 in Europe and in 2009 in the United States. It was established by the European Rare Disease Organization.

In 2017, 85 countries participated, according to NORD, the largest rare disease organization in the U.S.

@scrippsnews Today is recognized as Rare Disease Day. Rare diseases — defined as one that affects fewer than 200,000 people in the U.S. — impact about one in 10 American citizens. #RareDisease #health ♬ original sound - Scripps News


Trending stories at Scrippsnews.com