Rare Disease Day 2023: Date, History, Facts, Activities

On February 28, we observe Rare Disease Day. With so much going on in the world, it is very easy to put off important matters such as health. We mark the last day of February on our calendars annually to raise awareness about rare diseases. On average, 1 in 20 people suffer from a rare disease at least once in their lifetime, with few showing signs of improvement. The purpose of Rare Disease Day is to increase public awareness of rare diseases and to encourage researchers and policymakers to address the needs of those with rare diseases.

The background of Rare Disease Day

The European Organization for Rare Diseases established the first Rare Disease Day on February 29, 2008. This “rare” date occurs once every four years. Since then, Rare Disease Day has been observed on the last day of February, a month characterised by its small number of days. The purpose of the day is to raise awareness of rare diseases and improve access to treatment and medical representation for individuals and families with rare diseases. The treatment for a number of rare diseases is inadequate, as are the social networks supporting patients and their families.

Individuals observing Rare Disease Day participate in walks and press conferences, organise fundraisers, send mass letters to government officials, and host events, gatherings, and campaigns. In addition, the day features an open session of the European Parliament devoted to discussing policy issues regarding rare diseases. In the days preceding Rare Disease Day, there are numerous policy-related events, such as a reception at the British Parliament where policymakers meet with people with rare diseases to discuss issues such as equal access and availability of prevention, diagnosis, treatment, and rehabilitation.

Each year since its inception, thousands of events ranging from races and walks to art exhibits and workshops have been held. These events are held to attract the attention of policymakers and inspire community transformation. Historical landmarks such as the Colosseum and the Empire State Building have taken steps to send messages of solidarity on this day by lighting up in the iconic pink, blue, and green hues, giving millions of people worldwide hope.

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RARE DISEASE DAY ACTIVITIES

Share the news

Share social media posts about Rare Disease Day and encourage your friends to raise awareness for rare diseases.

Volunteer

Every year during the month of February, thousands of events are held around the world to commemorate Rare Disease Day. Rare Disease Day events are organised by patient organisations, healthcare professionals, researchers, policymakers, and other members of the rare disease community. Find local events or visit the website to create your own!

Share Your Story

Participate in Rare Disease Day by sharing your story and sending a message of support! You can write about your experience and submit photos or a video to rarediseaseday.org as well.

5 FACTS ABOUT RARE DISEASES

In the United States, 1 in 10 people suffer from rare diseases.

50% of patients with rare diseases are children.

Over 300 million individuals worldwide suffer from rare diseases.

Half of all rare diseases that affect humans lack a foundation or research support group.

There is no FDA-approved treatment for 95% of rare diseases.

RARE DISEASE DAY DATES