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What is Rare Disease Day?
Rare Disease Day was first celebrated in 2009 in the U.S. In the U.S., a rare disease is defined as a condition that affects fewer than 200,000 people.
February 28 marks World Rare Disease Day— a day most people don’t know about, according to National Organization for Rare Disorders (NORD).
Rare Disease Day is recognized around the world to raise awareness about the challenges faced by millions of Americans and nearly 300 million people globally impacted by rare diseases, as well as all those still without a diagnosis.
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There are several conditions classified as "rare diseases."
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According to the Rare Genomics Institute, Rare diseases are responsible for 35% of deaths in the first year of life. Also, 30% will not live to see their 5th birthday.
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Rare Disease Day was first celebrated in 2009 in the U.S., and the theme for 2022 is health equity.
"Health equity means that everyone has a fighting chance to live their healthiest life because they have equal access to the medical expertise, treatment and support services necessary to do so," Peter Saltonstall, president and CEO, NORD, said in a news release.
According to the Food and Drug Administration, more than 7,000 rare diseases affect more than 30 million people in the U.S. The agency said many rare conditions are life-threatening and most do not have treatments.
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"Drug, biologic, and device development in rare diseases is challenging for many reasons, including the complex biology and the lack of understanding of the natural history of many rare diseases," the agency said on its website.
Because rare diseases are largely unknown, doctors say even experimenting with proposed treatments can be challenging.
"The inherently small population of patients with a rare disease can also make conducting clinical trials difficult," the agency said.
The FDA said the U.S. has addressed the issue of rare diseases when Congress created the Orphan Drug Act in 1983. An orphan drug is a drug for a rare disease or condition. The act was designed to incentivize the development of drugs to treat rare diseases. Companies and other drug developers can request orphan drug designation and receive tax credits.
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Meanwhile, NORD encourages people around the world to raise awareness about the holiday.
"With each passing year, February 28 has continued to grow into an essential celebration to engage the rare community, elevate the stories of patients and families, and drive donations, the creation of new critical resources and innovative research in the rare disease space," the organization said.
This story was reported from Los Angeles.