We are members of the Cross Party Group on Rare Diseases so that we can work with other organisations representing people with rare conditions to give us all a stronger voice in parliament.
Over the last year the group has been great for keeping us informed about bigger picture for rare diseases which bleeding disorders are part of. In particular the work that has been going on to produce the Implementation Plan for Rare Diseases in Scotland which we told you about when it was published in July.
Today we discussed ideas to put to the MSPs about how the group can continue to grow and develop. Some of the ideas which were discussed included setting up working groups, investigating specific issues and giving more opportunities for you to talk directly to the MSPs yourselves.
If you have any ideas about what the Cross Party Group on Rare Diseases should be looking at over the next year we’d love to hear from you.