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Rare Disease Day 2023

Today marks Rare Disease Day 2023, the official international awareness-raising campaign for rare diseases which takes place on the last day of February every year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

What is a Rare Disease?

A rare disease is one which affects fewer than 1 in 2,000 people. Over 6,000 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. Relatively common symptoms can hide underlying rare diseases, leading to misdiagnosis and a delay in 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.

Did You Know

Rare is many. Did you know:

  • There are 300 million people living with a rare disease worldwide
  • There are over 6,000 rare diseases
  • 72% of rare diseases are genetic
  • 70% of those genetic rare diseases start in childhood
  • Almost 1 out of 5 cancers is rare

Find out more about Rare Disease Day 2023 here.