Rare Disease Day is annually observed across the globe on the last day of February, either 28th or 29th February (in case of leap year) to create awareness about rare diseases and ensure access to treatment and medical representation for individuals with rare diseases.
- The 28th February 2023 marks the observance of the 16th Rare Disease Day.
The theme of the Rare Disease Day 2023 is “Share Your Colours”. This is the continuation of the 2022 theme.
Significance:
Rare Disease Day is the global awareness-raising campaign for the 300 million people living with a rare disease worldwide
Goal: To increase equity for people living with a rare disease, improving their lives with equitable access to diagnosis, treatment, care and social opportunity.
Background:
i.Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008.
ii.The day was 1st celebrated on 29th February 2008 in Europe and Canada.
- 29th February was selected for celebrating the Rare Disease Day as it is a rare day that comes once every 4 years.
iii.Starting from 2009, several countries across the globe joined the celebration of Rare Disease Day.
Note:
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 988 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
According to the National Institutes of Health (NIH), there are more than 7,000 rare diseases, out of which approximately 95 percent have no treatment.
Global Chain of lights events:
With a global chain of lights events, the rare disease community is uniting for rare disease day to spread hope and solidarity across the globe.
The events invites people and organisations to light or decorate homes, buildings, monuments and other with the Rare Disease Day colours on Rare Disease Day.
