Medical Research: International Rare Diseases Research Consortium

Lord Avebury Excerpts

Thursday 28th February 2013 Lords Chamber

Asked By

[Lord Avebury]

To ask Her Majesty’s Government what support, if any, they are providing for the International Rare Diseases Research Consortium.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, the UK is a global leader in rare diseases research. The Government are pleased to be engaged with activities marking Rare Disease Day today. The Department of Health supports the International Rare Diseases Research Consortium. The National Institute for Health Research is a member of the consortium and has actively engaged with the work of the consortium from the outset. The Government are committed to providing faster diagnosis and better treatments for people with a rare disease. We recognise the importance of international collaboration in rare diseases research, and of its translation, in achieving this goal.

[Lord Avebury]

My Lords, I declare an interest as a sufferer from myelofibrosis, which is one of the 6,000-plus rare diseases that have been identified which affect 3.5 million people in the UK. May I ask my noble friend to comment on how the £100 million genome sequencing project is expected to contribute to the understanding of rare diseases? Secondly, will the rare diseases stakeholder forum that he announced yesterday consider the value to both patients and the NHS of care co-ordinators, which was emphasised by the NGO Rare Disease UK?

[Earl Howe]

My Lords, we have just announced the establishment of a rare diseases stakeholder forum. As my noble friend rightly mentions, it will be established shortly to bring together a wide range of stakeholders, including organisations representing those with rare diseases, to ensure that the patient voice is part of the discussion that we must have leading up the publication of the UK plan for rare diseases. The 100,000 genomes initiative, which my Department is funding, is about pump-priming—the sequencing of the genomes of 100,000 NHS patients—with the purpose of translating genomics into the NHS. This capacity will be allocated specifically to cancer, rare diseases and infectious diseases. The service design work will be completed by June and we aim to put contracts in place by April next year.