At our Board Meeting on Wednesday we decided to show our support for Rare Diseases Day by taking part in the worldwide campaign for Rare Diseases Day to get people to raise or join hands for rare diseases.
This year’s Rare Diseases Day Reception at the Scottish Parliament was particularly successful and we were very pleased to be able to take part.
Haemophilia Scotland works with individuals and families with a wide range of bleeding disorders – all of them are rare or ultra-rare conditions. Although there are less than 2,500 people in Scotland with a diagnosed bleeding disorder there are an estimated 300,000 people with one of the 6,000 to 8,000 recognised rare diseases. So, we maybe small on our own but together we have a very load voice indeed.
Now that a UK Rare Diseases Strategy has been agreed and the Scottish Rare Diseases Implementation Plan, It’s not rare to have a rare disease, is in place the focus this year will be on delivering real improvements for people with rare diseases in Scotland.