Rare Disease Day 2024: Know its history and significance

On this day, communities affected by rare diseases get the chance to unite and promote improved support, care, and treatment for people who are impacted by these illnesses.

The day was set up by the EURORDIS (the European Organization for Rare Diseases) in 2008. EURORDIS is a non-profit alliance of more than 1,000 rare disease patient organisations across 74 countries in the world. It works towards improving the lives of more than 300 million people living with a rare disease around the world.

As per the official website, there are more than 7,000 rare diseases detected across the globe and collectively they affect millions of people. Many of these rare diseases are considered life-threatening or severely debilitating, while in multiple cases patients face major challenges in obtaining a diagnosis, treatment, and receiving adequate support.

The day is observed every year majorly to ensure that people, who suffer from these diseases, get easy access to good medical treatment around the world. To fulfill the needs of these people, this day invites and encourages both researchers and policymakers to hold talks on global platforms.

This year, EURORDIS has announced that it will launch the #ActRare2024 campaign on February 29 which will outline the community’s eight key policy demands for the European Union's next cohort of decision-makers.

To be a part of this occasion, the organisation urged people to light up or decorate their homes with the Rare Disease Day colours at 7 pm local time on February 29.

“You can use garlands, social media filters, candles, disco lamps, colourful decorations. The most important thing is to let your creativity shine,” it stated.

Further, it has asked people to take photographs with the decorations and publish them on their respective social media accounts using the hashtags #RareDiseaseDay and #LightUpForRare.