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Rare Disease Day

Rare Disease Day is celebrated every year on the last day of February and raises awareness for the 300 million people living with rare diseases around the world and their families.

"What is a rare disease?"
A rare disease is a disease that affects fewer than 1 in 2,000 people. That is about 3.5-5.9% of the population.

Examples of Rare Diseases

There are rare diseases in every medical specialty. Certain conditions, like cystic fibrosis, are well-known by name, while others, like cat eye syndrome, are not as well-known. All but a few types of cancer are rare. Rare diseases of the skin, bones, and skeleton, metabolic, chromosomal, neurological, and muscular systems are among them. Rare diseases of the heart, blood, lungs, kidneys, and other organs and systems of the body are also among them.

Who is affected by Rare Diseases?

Rare diseases are largely inherited, which means they are passed down from parents to their kids. Some of them show up from birth, while others don't show up until much later in life. Children make up about two-thirds of all Americans who suffer from rare diseases.

Quick Facts

  • The lack of scientific knowledge and quality information on the disease often results in a delay in figuring out what disease a person has.

  • There are more than 7,000 rare diseases, according to the National Institutes of Health (NIH).

  • Of the 7,000 known rare diseases, approximately 95 percent have no treatment. Many rare diseases and disorders are not being studied by medical researchers.

  • Rare Disease Day was first observed in Europe in 2008.

Want to get Involved?

There are many ways to get involved for Rare Disease Day. Visit here to find out what's happening in your area.

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