Tag Archives: rare diseases

LibLink: Greg Mulholland MP: Drugs for ultra-rare diseases

Yesterday, Greg Mulholland held a Westminster Hall debate after constituents told him that the provision of drugs for their son was under threat because he has a very rare condition. You can read the transcript here.

People with rare conditions not only have to fight their illness, but also, because it’s rare, there is unlikely to be much in the way of research. Friends of mine have raised tens of thousands of pounds for research and to support other families after their baby son died of a rare neurological condition. Another friend set up a charity that brings together sufferers of her daughter’s rare disease from around the world every year and has worked to bring together specialists from various parts of the world.

There are huge question marks over funding for drugs for rare conditions after NHS England’s system was found to be discriminatory. Greg wrote for Politics Home explaining the issues and setting out what he wants the minister to do:

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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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  • User AvatarEddie Sammon 30th Jun - 3:08am
    John, by "hard-headed" I mean "what wins sustainable votes". Regards
  • User AvatarMark Green 30th Jun - 2:07am
    I don't see that a single issue united anti-Tory party could possibly work for the reasons that Dal pointed out. And while I think formal...
  • User AvatarT-J 30th Jun - 2:07am
    There should be agreement between the parties to bring about electoral reform. Certainly, there should be a pact between the smaller parties not to enter...
  • User AvatarSammy O'Neill 30th Jun - 12:55am
    This idea is so unfeasible, it's ridiculous. If we optimistically assume the Tories didn't win, In the time it would take to amend the voting...
  • User AvatarStewart 30th Jun - 12:51am
    I'm not hugely inspired. The leaflets I've received are very telling: - Farron's has that cosy old school sandals and leather patches feel to it,...
  • User Avatarkevin 30th Jun - 12:38am
    Roger Lake What's the point of having one let alone two elections when any change in the voting system would need to pass a referendum...
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