Last Update: February 28, 2023, 06:00 IST
Rare Disease Day is important because it advocates for raising awareness of rare but debilitating diseases. (Representational Image: Shutterstock)
Rare Disease Day 2023: As the name suggests, the day highlights how patients are affected by such uncommon diseases, and why there is a need for better social support
Rare Disease Day 2023: Every year, the last day of February is observed as Rare Disease Day across the world. The international day helps raise awareness among the public and policy makers about rare diseases that affect a small percentage of people worldwide. As the name suggests, the day highlights how patients are affected by such uncommon diseases and why there is a need for better social support. Here’s a look at the theme of this year’s event, its history and its significance.
Rare Disease Day 2023: Theme
According to the official website of the Rare Disease Day campaign, there are two themes for the event this year. The first is “Share Your Colours”, a continuation of last year’s theme. The second is “Light Up for Rare.” The themes urge patients, the general public, leaders, world governments and other policy makers to address the stigma associated with rare diseases.
The theme urges all the stakeholders to collectively help patients and their families fight the diseases by collectively creating awareness, encouraging others to be alert and come forward and help such patients.
Rare Disease Day: History
Rare Disease Day was instituted in 2008. It was the European Organization for Rare Diseases (Eurodis) that coordinated and celebrated on February 29, 2008. The day was marked because February 29 is a “rare” day and only occurs every four years.
This phenomenon was observed in several European countries as well as in Canada through the Canadian Organization for Rare Disorders (CORD). That year was also the 25th anniversary of the passage of the Orphan Drug Act to help develop drugs for rare diseases in the United States.
Rare Disease Day: Significance
Rare Disease Day is important because it advocates for raising awareness of rare but debilitating diseases. In India, the ‘National Registry for Rare Diseases’ has been created by the Indian Council of Medical Research (ICMR). In 2021, the Ministry of Health and Family Welfare approved the National Policy for Rare Diseases 2021 to deal with the management and investigation of such rare diseases.
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