Advocacy Awareness News

Today is Rare Disease Day

Today is Rare Disease Day

This year’s theme is, “Rare is many. Rare is strong. Rare is proud.”

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 28th of February is Rare Disease Day. The main objective of the 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 424,000 people out of a population of 5,295,000 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 Strategy Oversight Group working to implement the joint UK Rare Diseases Strategy.

In line with this year’s Rare Disease Day theme, we’d like to inform you of our plans for World Haemophilia Day on April 17th.

We’re finalising plans for a fun virtual challenge to mark the day, where participants will be invited to pledge to cover kilometres. Using the Union Canal and the Forth and Clyde Canal we have established a 100k route linking Scotland’s two adult Comprehensive Care Centres. We will ask people to walk, run, cycle, canoe, pogo-stick etc in their local area on World Haemophilia Day so that, collectively, the community makes the 100k trip. Those taking part will be encouraged to seek sponsorship using Virgin Money Giving.

If you would like more information or to take part, please complete the form below. We’ll be in touch with you with more information once we have finalised plans.

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