Rare Disease Day – 28th February

4 Mar. 2013

Rare Disease Day – 28th February

Check what events took place all over the world:

http://www.rarediseaseday.org/article/about-rare-disease-day

Check also the video done for the occasion:

 

Lord Avebury – who often blogs about his MPD myelofibrosis also asked a question in the House of Lords on the occasion of Rare Disease Day:

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?

You can check the question now – and the answer as soon as it is uploaded to the Hansard:

http://www.publications.parliament.uk/pa/ld201213/ldhansrd/text/130228-0001.htm#13022861001193

More articles from Lord Avebury on this website:

http://www.libdemvoice.org/author/eric-avebury

and

http://ericavebury.blogspot.co.uk/  where he often shares his blood results.