Report Launch: State of the Nation: Rare, Genetic and Undiagnosed Conditions
Following the publication of the UK Framework for Rare Disease, Public Policy Projects (PPP) is pleased to launch a major new report entitled State of the Nation: Rare, Genetic and Undiagnosed Conditions.
Description
This webinar on Rare, Genetic and Undiagnosed Conditions took place on 26 May 2021. To be notified of future events please register.
About this webinar
Following the publication of the UK Framework for Rare Disease, Public Policy Projects (PPP) is pleased to launch a major new report entitled State of the Nation: Rare, Genetic and Undiagnosed Conditions. We are pleased to be partnering with Takeda on this exciting report.
Patients with a rare, genetic or undiagnosed condition are facing unprecedented challenges as a result of the ongoing pandemic. The aim of this paper is to explore new ways of working, assess the opportunities to develop an implementation plan for the new Framework and outline opportunities to increase patient voice within improving care and support.
Chair: Baroness Nicola Blackwood of North Oxford, PPP Deputy Chair, Health & Life Sciences Policy Board, Chair of Genomics England, a Member of the Lords Science & Technology Select Committee and Honorary Professor of Science and Public Policy at UCL
Speakers: Dr Louise Wood, Director of DHSC’s Science, Research and Evidence Directorate and Karen Owen, patient representative.
Date: 26th May
Time 12.30-1.30pm
- 26 May, 2021 12:30 - 13:30 BST
- Virtual, Zoom webinar See map
