NHIP Lightning Talk: Why should we care about rare disease?

Monday December 13, 2021

This exhilarating NHIP Lightning Talk from Professor Dave Jones and Victoria Hedley drew a fascinating discussion on why should we care about rare disease. The presentation drew on what is distinctive in the management of rare disease at Newcastle, from translation of basic science to innovation delivery and policy and practice.

The session highlighted that seven out of ten patients presenting with rare disease, or those caring for them, have to reduce or give up work entirely, and one in three patients reports being depressed and unhappy.

Watch back the conversation which considered:

  • Minimising geographical variations with rare disease
  • Bi-directional conversations with industry
  • Collation of data in rare disease, with networks and virtual trials
  • Leanings from the European Reference Networks for rare disease towards the UK model

Watch the rare disease Lightning Talk event in full via our recording below:

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