Rare Disease Day 2025 – History, significance and other details

World Rare Disease Day 2024 will be observed on February 28, the last day of February. The day is observed to increase awareness about rare diseases and to support people suffering from such diseases with improved access to treatment. It’s also important to have a comprehensive health insurance plan that covers rare diseases, ensuring access to necessary treatments and support for affected individuals.

What is Rare Disease? What is the significance of Rare Disease Day?

A disease is termed as rare when it affects a single person in over 2,000 people. There are over 6,000 rare diseases identified around the world and over 300 million individuals are living with one or more of such rare diseases.

Rare Disease Day is a global movement on rare diseases that aims at providing equality to people suffering from such diseases. The day is also marked as an occasion to fight for the rights of the affected people in all spheres including healthcare, social prospects and better facilities of diagnosis and treatment.

Overall, it is estimated that an average number of 1 person in 20 suffer from a rare disease or face a rare disease at least one time during their life. Also, only a few of these diseases allow a cure, while for the rest of the people, they might have to live with the disease for life. Rare Disease Day aims to improve awareness of the common people about rare diseases. It also works towards addressing the requirements of such people who are living with a rare disease. Thus, every year the last day of February is marked as a Rare Disease Day.

Rare Disease Day 2025 – History

The Rare Disease Day was founded by a European Association working for rare diseases called EURORDIS along with more than 65 partners of national alliance patient organisations. The special day was initiated first on 29th February, 2008 to mark it on a ‘rare’ date (leap year) which comes only after four years. The day has been celebrated since 2008 on the last day of February every year.

Rare Disease Day is organized to enhance awareness about the rare diseases as well as to allow better access to good treatment for people living with rare diseases. There are many such rare diseases which lack treatment as well as support from organizations and groups.

Rare Disease Day – Activities and Events

From the very beginning of the event, the day has seen participation of people from all walks of life through various means such as workshops, art exhibits, and other activities like making rare disease day logos or writing rare disease day quotes etc. The events were held to inspire policy makers to bring change in the overall development and support of people with rare diseases.

Below are some activities through which you can participate in Rare Disease Day activities.

• Spread awareness among people – Use various tools of communication to spread the message of rare diseases among people and inspire them to further raise awareness
• Volunteer service – Since numerous events are taking place every year across different parts of the globe during the entire month of February, you can volunteer to be a part of one or two such events close to you. Further, you can also start an event on your own to support the cause
• Share stories – You can share your story to inspire other people. You can send message of solidarity or share photos and videos too on the occasion of International Day of Rare Diseases.

Some Rare Disease Day Facts

• Rare diseases affect children at a great extent
• It has been observed that over 50% cases of rare diseases have occurred in children
• Rare diseases affect as many as 300 million people globally
• Most of the people suffering from rare diseases do not have any support group to back them
• Most of the rare diseases lack treatment.

What is Unique About Rare Disease Day?

• Awareness raising – By informing and educating people about the Rare Disease, it improves people’s understanding about the rare diseases and encourages relevant authorities to address the various needs and requirements of people surviving with rare diseases.
• Finding Cure – Since majority of the rare diseases do not have proper cure, they may go undiagnosed. However, with awareness many possibilities can be opened for searching a cure to rare diseases.
• Saving lives – Various policies globally related to advances made in the rare diseases are seen over the years. These policies have helped in improving the life quality of people suffering from rare diseases across the world.