Rare Disease Day

Rare Disease Day seeks to raise awareness, instigate research, and advocating for policy change for rare diseases. The core purpose of this special day is to help those suffering from rare medical conditions that are otherwise overlooked due to their low prevalence. By bringing together medical researchers, healthcare professionals, patients, and families, it aims to break the isolation felt by individuals affected by rare diseases and foster a supportive community.

The first Rare Disease Day was observed in 2008, promoted by the European Organisation for Rare Diseases (EURORDIS), which has since become a global observance. The United Kingdom has actively participated in this event since its inception. With approximately 3.5 million people in the UK affected by a rare disease, it is essential to raise public and political awareness, motivate research funding, and improve access to appropriate diagnosis, treatment, and support for those living with a rare disease. Rare Disease Day ultimately contributes towards the betterment of healthcare services and quality of life for individuals and families affected by such conditions.

In the United Kingdom, Rare Disease Day is typically marked by various events and activities organised by charities, research institutions, and patient groups. These may include awareness-raising campaigns, social media drives, fundraisers, conferences, and public talks, among others. These events serve to educate the public, foster a supportive community, and inspire global collaboration in research and treatment efforts. Rare Disease Day is celebrated each year on the last day of February, which varies from the 28th to the 29th, depending on whether it is a leap year.