Description
Virtual Rare Disease Patient Roundtable on 29th September by invitation only. The Roundtable will be chaired by Deputy Chief Medical Officer for England, Dr Jenny Harries, and the Minister for Rare Diseases, Lord Bethell, will also join to give an introductory speech.The Roundtable will include a presentation on the results of the National Conversation survey and outline the key priorities identified for the new UK Rare Disease Framework, before opening the floor for discussion and questions. The full agenda is copied below. We are keen to ensure that the patient voice from across the UK rare disease community is at the heart of the new Framework, and your insight will be hugely valuable in shaping government policy.
14:30-14:35
Welcome and introduction
DCMO Jenny Harries
14:35-14:45
Ministerial welcome and introduction
PS(I) Lord Bethell
14:45-15:00
Presentation of National Conversation survey results
DHSC Policy team
15:00-15:10
Open floor for questions and discussion
DCMO Jenny Harries
15:10-15:25
Overview of the new post-2020 Framework
DHSC Policy team
15:25-15:55
Open floor for questions and discussion
DCMO Jenny Harries
15:55-16:00
Next steps and close
DCMO Jenny Harries
| Period | 29 Sept 2020 |
|---|---|
| Event type | Workshop |