Rare Disease Day is a globally-coordinated drive that works towards justice in social opportunity, healthcare and easy access to treatments for people living with a rare disease. This special day is observed every year on 28 February (or 29 February in leap years), which is why it is called the rarest day of the year.
History and Significance:
Since being established in 2008, the Rare Disease Day has taken part in structuring an international rare disease community that is united in purpose. It was set up and is coordinated by European Organisation for Rare Diseases (EURORDIS) along with 65 other national alliance patient organisation partners.
This special day works on providing an energy and focal point to progress on the local, national and international levels concerning rare diseases advocacy work.
How will the day be marked in 2022?
This year, the Rare Disease Day marks its 15th anniversary wherein the European Organisation and other communities will join in bringing the entire rare disease community across the world together on one platform.
Through a press release, the EURORDIS informed that they will be sharing 16 individual stories of patients, who are living with a rare disease from all around the world. By doing so, the community aims to show that each rare disease is unique and how to tackle the situation.
Furthermore, the European Organisation is also printing a children’s storybook with an objective to educate and inform children about rare diseases. These books will be for kids aged 5 to 8 years. These books will be available in more than 20 different languages that will not be part of any school’s curriculum.
Like last year, the community hopes to make this year's event a grand success with the campaign that goes with the hashtag - #LightUpForRare. They expect that more people will participate in 2022 and enable the powerful message of the campaign.
Last year, thousands of events took place in over 100 countries where people living with a rare disease and their families along with healthcare professionals, decision makers and industry representatives took part.