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The Impact of Rare Diseases: experience across hemispheres and health systems

Dates:30 April 2013
Times:14:00 - 15:00
What is it:Seminar
Organiser:Institute of Population Health
Who is it for:University staff
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  • In category "Seminar"
  • In group "(MHS) Primary Care"
  • By Institute of Population Health

Host: Centre for Primary Care, Institute of Population Health

Speaker: Dr Gisela Wilcox, Consultant in Metabolic Medicine, Department of Adult Inherited Metabolic Disorders, Salford Royal NHS Foundation Trust

Location: University Place

Abstract:

A rare disease by definition has a prevalence of less than 1/2000 (0.5%) of the population but such conditions collectively affect 6-8% of the population, or around 30 million people in Europe. Comprising over 6000 different disorders, over 80% are genetic, disproportionately affecting children: 30% of individuals with rare diseases die before the age of 5 years. Inherited (genetic) metabolic disorders represent one such group of rare diseases and affect individuals of all ages. The impact of rare diseases on affected individuals, families and carers, health professionals and health resources is high relative to their prevalence.

Many commonalities in the challenges faced globally by those whose “minority” status is defined by the rarity of their health condition are approached differently in different health systems. Though highly specialised medical care may be needed, the broader ramifications will be seen where the whole person is managed in the primary care setting. These issues will be presented and explored further.

All welcome. No booking necessary

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