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.
FDA approves first gene therapies to treat sickle cell disease
The Centers for Disease Control and Prevention says 100,000 Americans are living with 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.
A 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
