Tag Archives: rare diseases

Eric Avebury writes: Rare disease Day – a new report on care co-ordinators

rare-disease-day-logoTomorrow is International Rare Diseases Day, and I shall be asking in the Lords what contribution the Government are providing for the International Rare Diseases Research Consortium.

The EU defines a rare disease as one that affects no more than 5 in every 10,000 persons. But since between 6,000 and 8,000 such diseases have been identified, about 3.5  million patients are affected in the UK. Three quarters of these diseases can affect children, and nearly a third of the youngest patients die before their fifth birthday.

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Recent Comments

  • User AvatarT-J 29th Jul - 1:11am
    I'm not complaining. I already asked myself those questions and found the answers pointing in a different direction. Like I say, I used to be...
  • User AvatarDavid Allen 29th Jul - 12:53am
    LJP: I'm with Stephen Hesketh about status indicators. I think they would help if available for voluntary use. Someone like you could opt to leave...
  • User AvatarLittle Jackie Paper 29th Jul - 12:20am
    Stephen Hesketh - Status indicators: In my 19 voting years I have at various times, in various places voted for candidates put forward by all...
  • User AvatarRichard Dean 29th Jul - 12:10am
    @T-J. Well done. Those are some of the questions that need to be raised. Why not be on the side of raising them, instead of...
  • User AvatarT-J 28th Jul - 11:56pm
    Basically and long story short, the remaining supporters of the Commonwealth are looking at a glorious, wonderful sunset and thinking to yourselves, in half an...
  • User AvatarT-J 28th Jul - 11:51pm
    Richard Dean, there is a big difference between saying 'if this thing happened, it would be good', and coming up with an actual programme of...