Susan, Carolyn and Dan attended an excellent Rare Diseases Day Reception in the Scottish Parliament last night. The Garden Lobby was packed with MSPs, patients, carers, and healthcare professionals. Lots of patient organisations like ours were there and displaying posters about their work. The event was also well attended by representatives from both the Scottish Government and pharmaceutical companies who make products fro rare diseases.
A condition is classed are rare if less than 1 in every 2,000 people are effected. That means that all bleeding disorders are rare. There are up to 8,000 identified rare conditions with more being identified all the time. The Genetic Alliance estimates that there are 300,000 people with a rare condition in Scotland.
The Scottish Government has signed up to a single, UK-wide, Rare Diseases Strategy and has an implementation plan which sets out what that will mean in Scotland. There is also an oversight group to make sure that the plan leads to real changes on the ground.
Shona Robison MSP, Cabinet Secretary for Health, Wellbeing and Sport, told the event about her view of the need for patients to have good information and support. She also highlighted the importance of patient groups to the work of the Scottish Medicines Consortium.