Rare Disease Day

Rare Disease Day History

Rare Disease Day aims to raise awareness about rare diseases and their impact on patients and their families. The goal of the day is to promote increased recognition, enhance research and development, and improve access to treatment and medical representation for those living with rare diseases. It serves as a platform for individuals, patient organizations, and other stakeholders to advocate for increased resources and better policies in the management of rare diseases.

Established in 2008 by the European Organization for Rare Diseases (EURORDIS), Rare Disease Day has since garnered worldwide support, including the participation of Canada. Within the Canadian context, rare diseases affect nearly three million individuals, which translates to almost one in every 12 Canadians. This observance is particularly significant for the country, as it not only raises awareness but also fosters collaboration among government, researchers, healthcare professionals, and patient advocacy groups to address the unique challenges faced by the Canadian rare disease community.

In Canada, Rare Disease Day is observed through various events and activities involving patients, families, advocacy organizations, healthcare professionals, researchers, and policymakers. These events aim to educate the public about rare diseases, provide a platform for sharing personal stories, and promote collaboration among stakeholders to find solutions to the challenges faced by those affected. Rare Disease Day is officially observed on the last day of February each year.

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.
• According to the Canadian Organization for Rare Disorders, Approimately 3 million Canadians face debilitating diseases that severely impact their lives.
• Rare diseases and disorders are usually treated with orphan drugs. Orphan drugs are medicinal products intended for use in cases of serious rare diseases or disorders. They are called orphan because the pharmaceutical industry has little interest in developing products for a small number of patients. As such, it is up to governments and rare disease organisations to advocate for the development and production of rare treatments.
• According to Public Policy Forum CA, there are more than 7,000 rare diseases worldwide, which affects one in 12 Canadians.

In the News and Trending in Canada for Rare Disease Day

Top things to do for Rare Disease Day in Canada

• 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.
• Canada has several support organizations for rare diseases that offer a wide range of services, resources, and support to affected individuals and their families. Visiting these organizations, seeking their assistance, or contributing to their initiatives can be a meaningful way to observe Rare Disease Day.
• If you or someone you know is directly affected by a rare disease, sharing your story through personal blogs, social media, or local media outlets can be a powerful way to raise awareness and foster understanding.