Rare Disease Day is an observance holiday observed on the last day of February. The purpose of this holiday is to raise awareness about the 7,000+ rare diseases that afflict people worldwide and to advocate for improved access to treatment for patients affected by these diseases. It began in 2008 as a way to improve treatment for rare diseases, which is often inadequate.

History of Rare Disease Day

In 2008, Rare Disease Day was officially launched on February 29th of that year by several European nations and the Canadian Organization for Rare Disorders. This date was chosen because it is a leap day and is, therefore, a “rare” day in itself—a perfect representation of a holiday acknowledging rare diseases.

During this year, participants acknowledged this day by attending press conferences, walks, and various events held worldwide. The following year, the observance of Rare Disease Day was adopted for the first time by several countries.

Some of the countries that adopted it in 2009 include Argentina, Australia, China, Colombia, Panama, and the United States of America. Today, hundreds of organizations worldwide—including support groups and patient advocacy groups—celebrate Rare Disease Day.

Facts About Rare Diseases

There are over 7,000 rare diseases and disorders that affect over 350 million people worldwide. In the United States, 1 out of 10 people are afflicted with a rare disease—or about 30 million people. Of that total, approximately half of those afflicted are children. About 95% of the rare diseases in the world have no cures and do not even have effective treatments available.

Rare Disease Day Customs & Traditions

Rare Disease Day can be commemorated in several different ways. Participants can join an agency that helps patients with rare diseases; they can remind other people of the day by using the hashtag #rarediseaseday in all their social media postings; they can tell their story of their challenges with a rare disease or the challenges of a loved one; they can attend various events, raise and hold hands to show solidarity with those dealing with a rare disease; and they can donate their time or money to an organization that deals with a rare disease.

In 2016, in the United States, more than 80 events were organized across 30+ states. In the United Kingdom, Rare Disease Day is often celebrated with various receptions and focus groups. In Germany, 18 cities hosted an event for this holiday in 2016. Celebrations are often held all over North and South America, Europe, Asia, and Africa.