Rare disease tea party - BPSU

The British Paediatric Surveillance Unit invites you to this year's event to enjoy afternoon tea and cakes. Hear young people speak about their experience of living with rare disease and visit informational stands. Key note speeches will be delivered by Baroness Blackwood, Parliamentary Under Secretary for Public Health and Innovation, and by deputy Chief Medical Officer for England, Prof Jenny Harries.
Date: -
Time: -
Location

RCPCH
5-11 Theobalds Road
London
WC1X 8SH
United Kingdom

Limited availability
Free of charge

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.

See highlights from previous BPSU rare disease tea parties

Programme

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!