News & Events

Quarterly Policy Roundup, December 2018

Last Reviewed 19/11/2018

When

13/12/18 11:00 - 13/12/18 12:00

Where

Online

Join Genetic Alliance UK’s policy team on December 13, 11:00-11:50, for a roundup webinar of the key policy areas that affect the rare, genetic and undiagnosed community. This is an exclusive opportunity for members to ask questions and feed into our policy work.

The webinar will cover three areas:

  • Access to rare disease medicines
    We will update members 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 will 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
    Finally, we will focus on a new way forward for the 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.

If you would like to join us, please complete the relevant survey below, including any questions you would like to see answered on the above topics.

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