The last day in February is always Rare Diseases Day because, like this year, one year in four it falls on the rarest day in the calendar.
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 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.
This year the day fell during the visit of the Haemophilia Scotland to our friends at the Kenya Haemophilia Association (KHA). The World Federation of Hemophilia (WFH) run the Hemophilia Organization Twinnings (HOT) programme which partners emerging and established haemophilia patient groups for a maximum of four years to share knowledge and skills in areas such as patient education, outreach, fundraising, and all other aspects of operating a successful haemophilia patient organization. Were delighted to be WFH HOT partners with the KHA and to have been awarded HOT partners of the year in 2018. This year we are visiting Kenya and, together with the KHA, running focus groups with their key stakeholders and working closely with their board to develop a new fundraising strategy to help them deliver their new strategy.