5-11 Theobalds Road
The BPSU rare disease tea party will bring together stakeholders from across the rare disease community to hear young people and patient advocates speak about their experience of living with rare disease and working in the rare disease field.
This event is intended to be an informal networking opportunity with children and young people and carers, healthcare professionals, researchers and policy makers.
Keynote speeches will be received by Baroness Blackwood, Parliamentary Under Secretary of State for Public Health and Innovation and by the Deputy Chief Medical Officer for England, Prof Jenny Harries on the diagnostic odyssey many patients with rare disease face and the latest developments in rare disease research.
Young people and patient advocates will speak on their experience of rare disease, including:
- the mental and social challenges of living with these conditions
- the place of rare disease within the medical education curriculum
- the importance of peer support networks in creating a secure space for young people to share their experiences.
Presentations will be received from Sarah Lippett, author of A Puff of Smoke; Nicola Miller, Rare Revolution Magazine; Laurence Woollard, On the Pulse; and more!