Rare Disease Day

Rare Disease Day History

Rare Disease Day raises awareness about rare diseases, their impact on patients' lives, and the importance of research and collaboration in developing treatments, providing support, and advocating for resources. The purpose of this annual event is to create solidarity and understanding among the general public, healthcare professionals, policymakers, researchers, and industry leaders about the unique challenges faced by those living with rare diseases -- which often include mortality, disability, lack of adequate treatments, social stigma, and economic burden. It is also a time to celebrate successes and highlight the ongoing efforts to improve the lives of millions of people affected by these conditions.

Rare Disease Day was established in 2008 by the European Organization for Rare Diseases (EURORDIS), along with the collaboration of other global organizations and stakeholders. The global response to this initiative from patient organizations, healthcare departments, and research institutions has been exceptional, turning it into an international occasion celebrated in over 100 countries. Since its inception, Rare Disease Day has inspired the formation of national alliances, policy improvements, research funding, and networking opportunities that advance the rare disease community and bridge gaps in knowledge and resources.

Rare Disease Day occurs on the last day of February each year, chosen for its rarity as it falls on the 29th during leap years and the 28th in other years.

Top facts about Rare Disease Day

• According to raredisorders.ca, in 2023, about 1 in 12 Canadians, or close to 3 million people are affected by a rare disease.
• The logo for Rare Disease Day is a handprint, symbolizing the uniqueness of each individual affected by a rare disease.
• Because symptoms of a rare disease can often mimic common illnesses, they can often be misdiagnosed or undiagnosed for years.
• It is estimated that approximately 30 million Americans, or nearly 10% of the population, have a rare disease as defined by the 1983 Orphan Drug Act, where a rare disease affects fewer than 200,000 people in the United States.
• Approximately 50% of people affected by rare diseases are children, and about 30% of children with rare diseases will not live to see their fifth birthday.
• In America, over 7,000 rare diseases are known to exist, affecting both children and adults. Around 80% of these rare diseases are genetic in origin, making research and treatments highly focused on genetics and precision medicine.

In the News and Trending in the US for Rare Disease Day

Top things to do for Rare Disease Day in the US

• Get involved in Rare Disease Day by finding an event near you.
• Better your empathy and understanding by exploring the lives of those living with a rare disease.
• The Show Your Rare campaign encourages people to wear jeans and share their photos on social media to raise awareness.
• Sometimes local landmarks or buildings may be lit up in Rare Disease Day colors (blue, pink, and green) for the day.
• Many use the day as an opportunity to donate to research and support organizations, or to encourage others to do so.
• Many engage in reading articles, watching documentaries or listening to podcasts about rare diseases.

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