News & Events

Quarterly Policy Roundup: Resetting the Model

Last Reviewed 19/06/2019

When

2/7/19 11:00 - 2/7/19 11:45

Where

Online

Join Genetic Alliance UK’s policy team on Tuesday 2 July, 11:00 – 11:45 for a policy roundup webinar, in which we will discuss our work on access to rare disease medicines. We will give members the chance to ask questions and feed into our policy work.

For the past 15 months, Genetic Alliance UK have been working on an ambitious and innovative policy project, aimed at improving the way that decisions on rare disease medicines are made. We are reaching the final stage of this project, and are excited to share with you an update of our progress.

In this webinar, we will provide:

  • An update on the project to date
    We’ll explain the work we have conducted so far, and how we have incorporated the feedback you’ve given us.
  • An explanation of what we plan to deliver, when and how
    We plan to launch using multiple platforms and by hosting a launch event. We’ll give you an insight into these plans, and how you can expect to get involved.
  • A revised project timeline
    Due to the scope of the project and the political climate that we’re facing, we have revised our timeline to launch the project in Autumn 2019. We’ll discuss this change in the webinar.
  • Our next steps
    Our final survey will rest our findings against your experience of access to rare disease medicines. This will build upon the data we have already collected, and ensure we form a complete picture of the issues faced by patients/stakeholders.

If you would like to join us, please fill in the form below, including any questions you would like to see answered by the policy team.

This webinar is for Genetic Alliance UK members only. The deadline for signup has expired.

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