“The UK Strategy aims to ensure that no one gets left behind just because they have a rare disease. We want to put patients’ needs first.”
My heart is lifted as I read those words. A policy document from government that I can agree with. An opportunity to make a difference. I want to be at Westminster today, cheering and waving for the launch of the UK rare disease strategy.
Colleagues from the rare disease partnership travelled to Whitehall, made conference calls, drafted papers and lobbied hard. Patients and practitioners had input to this strategy. Crucially, the same people have key roles in developing the implementation plans for each of the 4 UK countries. Those plans will be launched on rare disease day, 28 February 2014. (You will read lots more about that event, never fear.)
The key areas of the strategy are:
empowering those affected by rare disease
- identifying and preventing rare disease
- diagnosis and early intervention
- coordination of care
Sensible things. We can work on these.
We are stronger together.