Oral Answers to Questions

Debate between Lord Hanson of Flint and Jane Ellison

Tuesday 5th January 2016 Commons Chamber

[Mr David Hanson (Delyn) (Lab)]

4. How many people have diseases classified by his Department as rare.

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

A rare disease is a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000. Research shows that one in 17 people will suffer from a rare disease at some point. In the UK, that equates to approximately 3.5 million people.

[Mr Hanson]

Same But Different, which is based in my constituency, is concerned about a number of the challenges faced by people with rare diseases. One key issue that it has raised with me is the level of support available at the time of diagnosis, particularly for parents of children with rare diseases. Will the Minister examine how we can signpost better help and support to those who have been diagnosed?

[Jane Ellison]

I am glad the right hon. Gentleman mentions that point; the House may not be aware that we recently added four new rare diseases to the newborn heel-prick test, which has helped to detect more than 1,400 children with a rare disease. I am disappointed to hear that he feels that some parents had issues with follow-up, and of course we will look into that, but I think he will find that the UK rare diseases strategy, which was published in 2013 and contains 51 commitments from government, covers that. The first report back on that strategy will take place this spring and it is being done by the UK Rare Disease Forum. I am happy to speak to him afterwards about whether the excellent organisation he names is part of that.