01 Mar 29th February 2024 is Rare Disease Day. 🤗 Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. 72% of the diseases are genetic and almost 1 out of 5 cancers is rare. Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.

Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers. The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease. The main objective of Rare Disease Day is to raise awareness  amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.

Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. To find out more about Rare Diseases Day event in your local area go to https://www.rarediseaseday.org/  Together we can make a difference! 

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