World Rare Disease Day 2022: Raising awareness about the unknown holiday

are several conditions classified as "rare diseases." RELATED: Boy, 11, dies of rare cancer after family celebrates Christmas earlyAccording 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.Aspen Deke’s family thought the 17-year-old had escaped the worst after beating a rare cancer three times in her life, but tragically, the teenager died from COVID-19 complications on Saturday.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.RELATED: Chandler kid battling rare cancer receiving well wishes from neighbors and others across the country"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.