Today is Rare Disease Day!
There are around 300 million people living with a rare disease worldwide with between 6000-8000 different rare diseases. 72% of rare diseases are genetic and 70% of those genetic rare diseases start in childhood.
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. Rare diseases are those that affect a small number of people – 5 people or fewer in 10,000. There are between 6000 and 8000 rare diseases that affect approximately 8 per cent of the population in Scotland. That means approximately 440,000 people out of a population of 5,500,000 in Scotland have a rare disease. Even the more common bleeding disorder, such as von Willebrand’s or Haemophilia A, are rare diseases. We must work together with other rare disease groups in Scotland as together we can have a much louder voice. It’s not rare to have a rare disease; 1 in 17 people will have a rare disease during their lifetime. In Scotland, there is a Rare Diseases Action Plan that was published in December 2022.