February 29th marks Rare Disease Day. With over 300 million people globally living with a rare disease, we join hands across borders and amidst the 6000+ rare diseases to advocate for equitable access to diagnosis, treatment, care, and social opportunities.
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.
On this Rare Disease Day, we celebrate the remarkable resilience and unwavering hope exhibited by individuals and families facing rare diseases. Despite the challenges they may encounter, their strength and determination inspire us all to continue our efforts in raising awareness, driving positive change, and fostering a more compassionate and inclusive society.
In Scotland, there is a Rare Diseases Action Plan that was published in December 2022.