Leap Day Is Rare Disease Day: Why Does It Matter?

Feb. 29, the leap day that only comes once every four years, is the internationally recognized 'Rare Disease Day."

The campaign, which has been observed on the last day of February every year, is dedicated to generate awareness about the impact that rare diseases have on society.

According to International Business Times, this year marks the ninth-year run of the campaign. With the theme "Join us in making the voice of rare diseases heard", it aims to make the general public and decision-makers to understand how rare illnesses affect the lives of patients and what can be done to help.

A rare disease, also referred to as an "orphan disease," is defined by the Rare Disease Day's website as any disorder that affects a small percentage of the population. In the U.S., a disease is classified rare when it affects fewer than 200,000 Americans at any given time. On the other hand, in Europe, conditions that affect 1 in 2,000 persons are considered as rare diseases.

Launched by Eurodis, a nongovernmental alliance of rare disease patients' organizations, the campaign became an international phenomenon when U.S. joined in 2009. It is now being celebrated in more than 80 countries worldwide.

In an article on the Huffington Post, Erica Barnes, founder of Chloe's Fight Rare Disease Foundation, wrote that rare diseases should be given attention from the medical community, policymakers, and the general public. She explained that rare diseases are actually not rare as they affect 30 million people when the patients are counted collectively.

Barnes, whose daughter passed away from a rare disease, added that only four percent of 7,000 rare diseases have an effective treatment. She added that the lack of treatments was attributed to the fact that rare disease research faces various challenges.

"Until the last couple of decades rare diseases were truly neglected in the medical community and by society in general," Barnes wrote. "Fortunately, through a combination of legislation and advocacy, more people are beginning to understand why everyone should care about Rare Disease Day."