Rare Disease Day: History, Theme, Importance, and Significance

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Rare Disease Day 2024

Rare Disease Day is dedicated to spreading awareness among people suffering from rare diseases and how to prevent them. It is an annual observance celebrated on 29 February. This day is celebrated to unite people suffering from rare diseases, caretakers, and other healthcare professionals. According to the World Health Organization (WHO), the frequency of rare diseases should be less than 6.5 to 10 persons per 10000 patients. Stay tuned and continue reading to get complete details about Rare Disease Day 2024!

Also Read: World Pneumonia Day

What is a Rare Disease?

Rare Disease Day 2024
Source: Wikipedia

A rare disease is defined as a medical condition that affects less number of people. The quantity varies depending on the region. In general, the USA considers a disease to be rare if it affects less than 200000 people. However, in the European Union, rare diseases are the diseases that affect less than 50 people in 100000 of the population. 

Source: rarediseaseday

As per an estimate, around 300 million people in the world have to deal with rare diseases. There are approximately 7000 rare diseases in the world and some are still being discovered.

Here is the list of some rare diseases:

  • Alkaptonuria
  • Gaucher Disease
  • Muscular Dystrophy
  • CHILD Syndrome
  • Aarskog Syndrome
  • Cystic Fibrosis

When is Rare Disease Day 2024 Celebrated?

Rare Disease Day 2024 is celebrated on 29 February 2024. Organization for Rare Diseases India also known as ORDI is set up to offer a collective voice for patients suffering from rare diseases. As per the study conducted by ORDI, there are around 263 rare diseases in India affecting a large Indian population.

Source: National Press Foundation

Rare Disease Day is celebrated in leap years on 29 February. The need to establish a platform to raise awareness about rare diseases and to tackle the difficulty of diagnosis of rare diseases was established in the 1980s. 

In 1999, the European Organisation for Rare Diseases (EURORDIS) dedicated a special day to raise awareness about rare diseases across Europe. It was first celebrated in 11 European countries and marked the initiation of a global movement to spread awareness in the healthcare sector.

In 2008, the need to recognize Rare Disease Day went global and many other countries joined the event to make it an International day.

In 2015, Rare Disease Day was officially declared an International Day by the United General Assembly thus solidifying the significance of this day.

Also Read: World Cancer Day

Rare Disease Day Theme 2024

As per rarediseaseday.org, a rare disease is rare if it affects fewer than 1 in 2000 people. Out of all the rare diseases, 72% of them are genetic diseases.

The theme for Rare Disease Day 2024 is “Share Your Colours”. So, you can join the community and share your pictures with your thoughts with #LIGHTUPFORRARE. Light up your space and create a Global Chain of Lights on this Rare Disease Day to spread awareness about rare diseases and the difficulty in diagnosis of rare diseases.

Light Up for Rare
Source: rarediseaseday.org

Importance of Rare Disease Day

This day is celebrated to raise awareness in society about various aspects of rare diseases including the following:

  • Early diagnosis and treatment.
  • Increased research and development in the healthcare sector.
  • Provide improved access to care to patients suffering from rare diseases.
  • Support for patients and their families.

Also Read: World Brain Tumor Day


Rare Disease Day is very important as it advocates for the concerns of people who are suffering from rare diseases and raises awareness of them.

  1. Because they are rare, they are difficult to diagnose and sometimes misdiagnosed and poorly understood. This could ultimately lead to the wrong medical treatment. Rare Disease Day raises awareness of them and their significance among the general public as well as among medical professionals.
  2. Raising awareness promotes empathy and comprehension, which improves social support and lessens the stigma associated with having a rare illness.

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When is World Rare Disease Day?

World Rare Disease Day is celebrated at the end of February. This year it will be celebrated on 29 February 2024. It is a global annual observance celebrated to promote awareness about the rare disease and its diagnosis. 

What is the theme for Rare Disease Day 2024?

The theme for Rare Disease Day 2024 is “Share Your Colours.” The rarediseaseday.org hosts an event to group people around the world “Light Up for Rare.”

When will the FDA host Rare Disease Day 2024?

FDA will host a virtual meeting on 1 March 2024 on the occasion of Rare Disease Day to celebrate Rare Disease Week. This year’s Rare Disease Day is dedicated to patients and healthcare professionals.

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