Rare Disease Day

Rare Disease Day History

Rare Disease Day is dedicated to raising awareness about rare diseases and the challenges faced by patients and their families. Its purpose is to foster understanding of these conditions and to promote research and collaboration among health professionals and policymakers. The Observance focuses not only on the importance of early diagnosis and treatment but also on the necessity for emotional and practical support for those living with a rare disease.

The idea of a day dedicated to rare diseases was first proposed in 2008 by the European Organisation for Rare Diseases (EURORDIS) and quickly gained support across numerous countries, leading to its worldwide recognition. It is crucial for people in the European Union to be aware of Rare Disease Day as millions of EU citizens live with a rare disease, and these conditions can have profound effects on their lives. The EU has actively supported research and initiatives targeting rare diseases, aiming to improve treatment options, diagnostic measures, and the exchange of information among member states.

Rare Disease Day in the European Union is marked by various events and activities, aiming to enhance public knowledge and encourage discussions on rare diseases. Conferences, workshops, educational seminars, and awareness-raising campaigns are organized across member states, involving patients, families, health professionals, researchers, and policymakers. Social media and traditional media platforms are also employed to share information, personal stories, and educational materials about rare diseases. Rare Disease Day is observed on the last day of February.

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.
• Rare diseases often have a significant impact on patients and families due to their chronic, progressive, degenerative, and life-threatening nature. Many rare diseases have no cure, and patients often experience a reduced quality of life, disability, and a shortened life expectancy.
• Orphan drugs are medicinal products intended for the diagnosis, prevention, or treatment of rare diseases. In the EU, orphan drugs benefit from incentives such as market exclusivity, fee reductions, and research funding to encourage their development and availability for patients.

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

Top things to do for Rare Disease Day in the EU

• 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.
• Watch Unrest (2017). This documentary tells the story of Jennifer Brea, who is diagnosed with myalgic encephalomyelitis, also known as chronic fatigue syndrome. It also sheds light on the millions of people worldwide suffering from this rarely understood disease.
• Rare Disease Day is an excellent opportunity for people living with rare diseases, their families and friends, and medical professionals to connect, share experiences, and build support networks.