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SUMMARY:Rare Diseases\, equity and social justice in contemporary UK healt
 hcare - Alev Sen\, Department of Sociology\, University of Cambridge
DTSTART:20190514T121000Z
DTEND:20190514T130000Z
UID:TALK123277@talks.cam.ac.uk
CONTACT:Dr Jenny Zhao
DESCRIPTION:In 2013\, the four UK health departments launched a collaborat
 ive UK Strategy for Rare Diseases\, which included outlining a shared visi
 on ‘to ensure no one gets left behind just because they have a rare dise
 ase’ (Department of Health\, 2013). At the time\, this formal recognitio
 n of concerns about equity and social justice in UK healthcare for patient
 s with rare diseases was heralded as a ‘landmark’ by campaigners. Sinc
 e then\, whilst some changes have been welcomed as improvements\, the pers
 istence of problems\, such as delays in diagnosis\, restricted funding of 
 medicines\, and patchy local provision\, remain on the agenda. This talk w
 ill explore the formation and impact of campaigning on rare diseases in co
 ntemporary UK healthcare. Questions considered will include: How are ‘ra
 re diseases’ defined and constituted? And what forms of systematic disad
 vantage are they associated with? Rare diseases\, as an emergent site of a
 ctivism\, may illuminate new and pressing factors effecting the distributi
 on of healthcare in the UK today.\n\nAlev Sen is a PhD candidate at the De
 partment of Sociology\, University of Cambridge.
LOCATION:The Richard King Room\, Darwin College
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