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.
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Referenceswww.rarediseaseday.org: Rare Disease Organization www.raredisorders.ca: Rare Diseases ppforum.ca: Rare Diseases In Canada