The ABPI is holding the next of its Rare Disease Member Event on 10 March 2020.
Building on the discussion on the access environment at the November meeting, we will be joined by James Palmer, NHS England’s Medical Director for Specialised Services.
James will update us all on NHSE’s work in the rare disease environment and set out their priorities for 2020. He will also give his perspective on how the Specialised Commissioning team interacts with the Commercial Medicines Directorate.
James will be followed by Alastair Kent, co-chair of the UK Rare Disease Policy Board at around 11:15, who will also give us his issues/priorities from a more national perspective and will cover the development of the new UK Strategy for Rare Diseases framework.
Please note, this event is for ABPI member company colleagues only. Please ensure you register with your company email address.
110 Rochester Row
Tuesday 10 March 2020
9:30 - 14:30
Our agenda for the day is as follows:
09:30 Arrivals and registration
10:00 Update and Review of Rare Disease Day activities
10:30 James Palmer presentation
11:15 Alistair Kent presentation
12:00 Lunch and networking
12:45 Access Policy Environment Update and Review:
13:15 Beyond Access: what should our key policies be on early diagnosis, rare disease centres, and screening?
14:00 Member feedback, future meeting content and close
Rare Disease Day 2020 – 29 February 2020
For Rare Disease Day 2020 and beyond, the ABPI is looking to promote industry policy priorities for rare diseases.
Our overall goal is to make clear that people with rare diseases deserve the same access to treatment as everyone else.
Underpinning all this will be patient stories to help us demonstrate that collectively, rare diseases are not that rare.
To convey our messages, we are developing web content, social media collateral, case studies and thought leadership articles. All materials will be hosted on the rare diseases hub on the ABPI website.
To make this campaign a success, we are still looking for contributions from members, particularly:
Please do get in touch with KGelsthorpe@abpi.org.uk if you think you can help, and hope this is helpful.REGISTER NOW