RARE DISEASE DAY 2022: Rare Disease Day is observed on February 28, or February, which in itself is the rarest day in the calendar. The day is observed globally and raises awareness about, as the name suggests, rare diseases. Let’s dive deep into what this day is and how it came to be.
Rare Disease Day: History
Rare Disease Day was set up and globally coordinated by EURORDIS (European Organisation for rare diseases) and was first observed in 2008. EURORDIS is a non-governmental and patient-driven organisation that comprises a total of 998rare-disease patients from 74 countries. These 998 people work for the betterment of roughly 30 million people who suffer from rare diseases in Europe.
Now, the Rare Disease Day and the backbone organisation, EURORDIS, boasts of 106 countries involved in their initiative. Over the years, they have successfully organised more than 600 events.
Rare Disease Day: Theme
Rare Disease Day 2022 will be observed with the same vigour and passion as other Rare Disease Day has been observed since 2008. This year, the theme of Rare Disease Day is ‘Share Your Colours.’ With this year’s observance, the organisation will try to influence policies to improve the lives of people living with rare diseases. This can include fast diagnosis, better access to therapies, and reinforced research and development surrounding these diseases.
Rare Disease Day: Significance
As per the data collected by EURORDIS, there are roughly 30 crore people suffering from around 7000 rare diseases. EURORDIS, through the observance of Rare Disease Day, represents these 30-crore people and tries to influence the policymakers to align the development of the health infrastructure, according to the people who live with rare diseases.
Here is the official video of Rare Disease Day 2022, fostering this year’s theme, ‘Share Your Colours.’
This year, the organisation is urging people to send across their experiences through photos and videos.
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