If you are responding to the consultation on rare diseases..

Posted on May 4, 2012 by


Yesterday I went to a great workshop organised by Rare Disease UK to get lots of people with different interests in rare disease together to talk about the government’s plan for rare diseases. The government is asking for our views on their proposed plan so this was a good opportunity to pull out some of the different perspectives ahead of writing our responses – the deadline is coming up soon on 25 May.

If you are thinking of responding, Rare Disease UK has lots of resources you might find useful to get a handle on other people’s thoughts on the plan including  powerpoint presentations from a series of webinars they held and really usefully they have gone through the entire plan, comparing it with the proposals they made in their Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy report so you can easily see which of the RDUK recommendations the government is and isn’t planning to do, or what they are planning to do instead. Great idea – I’m loving this for unraveling the ins and outs of the consultation.


Rare diseases affect a lot of people – 1 in 17 people at some point in their life. The UK signed up to a Council of the European Union communication on rare diseases back in 2009 . This committed the UK to developing a national strategy for rare diseases by the end of 2013.

Those with rare diseases and charities and organisations representing them teamed up to create Rare Disease UK – a national alliance which set out to campaign for the health departments across the UK to develop this strategy. AMRC are part of Rare Disease UK. They established working groups of experts and produced a report called Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy recommending what a strategy should look like if it is going to be comprehensive and effective, and accurately reflect the needs of the rare disease community.

Rare Disease UK has also worked closely with the Department of Health and devolved parliaments to champion the need for the strategy and what it should cover.

The Department of Health launched their proposals for a UK plan for rare diseases aimed at improving the services, treatment and support that people with rare disease receive on 29 February. They are now consulting on the contents of the plan – the consultation closes on 25 May.

There has been some concern over the contents of the proposed plan, whether it goes far enough and wanting more detail on how some of the ideas will be implemented. Rare Disease UK are encouraging as many people as possible to respond to the consultation with their views.

What next?

Once the consultation has closed, the government will publish a summary of all the responses they get to this consultation alongside any further action they will take. So responding to this consultation will ensure they consider all our views on the plan as they decide how to take this forward. The plan includes proposals covering research and the role of patients in influencing policy and fostering research so AMRC will be responding in these areas where we can add expertise.

Posted in: Policy