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 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.
You can access the slides for the webinar here, or watch a recording of the webinar below.