The event aims to raise awareness about the difficult situation faced by people suffering from any of the 6,000 such conditions that have been identified.
World Rare Disease Day is celebrated on the last day of February each year. Promoted by the European Organisation for Rare Diseases ( Eurordis ), the day aims to raise awareness about the difficult situation faced by people living with these types of conditions.
Why is World Rare Disease Day celebrated today?
Eurordis was founded in 1997 with the aim of ensuring that all people living with these types of conditions have access to the necessary medications .
In 2008, the organization decided to launch a continent-wide day of observance, which Canada also joined. The chosen date for the initiative was the last day of February each year, either the 28th or the 29th, due to the rarity of this day, which occurs only once every four years and falls within the shortest month of the year . The day was a resounding success, and the following year, numerous countries around the world joined the initiative; a trend that continued to grow over time.
The aim of this day is to draw attention to how these types of diseases affect the people who suffer from them, as well as their families and loved ones.
What are rare diseases and some facts to understand the importance of this day
Rare diseases are defined as such by the number of people who suffer from them worldwide, and according to the European Union (EU) , a condition is considered rare when it affects fewer than one individual per 2,000 . Currently, between 3.5 and 5.9 percent of the world's population suffers from some type of rare disease , and there are approximately 6,000 identified rare diseases in total.
Often, rare diseases present a There is an enormous diversity of symptoms, which even vary among patients with the same condition. This is why medical care and diagnosis are often inadequate . As Eurordis states, “the quality of life of a person living with a rare disease is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”
According to this organization, medical expertise and knowledge on the subject are limited. This, coupled with inadequate care and limited research, makes World Rare Disease Day the ideal opportunity to raise awareness of all that these diseases entail and to strengthen efforts in this area.