The Impact of Rare Diseases: experience across hemispheres and health systems
|Starts:||14:00 30 Apr 2013|
|Ends:||15:00 30 Apr 2013|
|What is it:||Seminar|
|Organiser:||Institute of Population Health|
|Who is it for:||University staff|
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
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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