News & Events

Industry webinar

Last Reviewed 20/11/2018


12/13/18 10:00 am - 12/13/18 10:50 am



Join the Genetic Alliance UK Policy Team, on 13 December, 10:00 – 10:50, to find out the key policy areas that we are working on. During the webinar we’ll be covering four topics:

  • Access to rare disease medicines
    We’ll provide an update on our Resetting the Model project. The project aims to design a new health technology assessment pathway, which addresses flaws in the current model and improves access to medicines for rare diseases within the UK.
  • Newborn screening in the UK
    We’ll share our initial findings from our investigations into newborn screening in the UK. We’ll discuss how to ensure that the current screening system works and how to build a screening system that works for the future.
  • UK Strategy for Rare Diseases
    We have just over a year until the 51 commitments within the UK Strategy for Rare Diseases must be implemented. That is why we are calling for a refresh and review of the Strategy.
  • Rare Disease Day 2019
    We will be providing an update on Rare Disease Day and demonstrate the tools and resources industry supporters can use to show their support.

Register your place below. If you have any questions you would like to see answered, you can share them with us when you register. Please note this is open to Rare Disease UK industry supporters only.

Industry webinar

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