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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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Recent Comments

  • User AvatarRuth Bright 22nd Jan - 1:49pm
    Mary and Mark - exactly.
  • User AvatarPaul Holmes 22nd Jan - 1:39pm
    There was something about that 1970's generation of Liberal campaigners that we need to replicate today. Since 1986 I live in Brockwell Ward in Chesterfield...
  • User AvatarJulian Tisi 22nd Jan - 1:34pm
    Thanks for this article James, I agree. I had commented on a separate thread with some similar points before I read yours! I completely agree...
  • User AvatarTynan 22nd Jan - 1:28pm
    Correction current population is around 7.8 billion, predicted to be around 9 billion by 2050, was using old source.
  • User AvatarDavid Raw 22nd Jan - 1:27pm
    Good thinking, James. A sure fire way to persuade the four and a half million people who voted Lib Dem in 2010 (but didn't in...
  • User AvatarStephen Howse 22nd Jan - 1:25pm
    "There is no way the planet can sustain 11 billion people anywhere close to a lifestyle which the western world currently still takes for granted....