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A Code of Good Practice on the Rights and Quality of Life of people affected by Multiple Sclerosis.

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Presentation on theme: "A Code of Good Practice on the Rights and Quality of Life of people affected by Multiple Sclerosis."— Presentation transcript:

1 A Code of Good Practice on the Rights and Quality of Life of people affected by Multiple Sclerosis

2 Structure of the code A seven page political statement reflecting the “state of the art” practice outlined in reference documents on Disease modifying therapies (e.g. Interferons) Symptomatic treatments (e.g. against bladder problems) Rehabilitation Palliative Care Principles of Quality of Life Supported by facts and figures on epidemiology and resources available (or not) as shown in an interactive internet database (www.europeanmapofms.org ) pluswww.europeanmapofms.org

3 Structure of the Code cont’d Description of good practice in four key areas being critical for persons with MS, their families and their carers: Equal rights and access to therapies and services A shared agenda in MS research throughout Europe Employment and job retention Participation and Empowerment

4 Model character European Code of Good Practice in Multiple Sclerosis focuses on the key needs of persons with MS, their families and their carers method of development (small consensus group first, repeated consultation processes with the leading experts in Europe, publication of the widely accepted findings, regular updates when necessary) can serve as model for other chronic conditions.

5 Purpose of the Code The European Code of Good Practice in Multiple Sclerosis is a political instrument offering help to national responsible authorities By following the Code, authorities will raise the standards in the mentioned four key areas being critical for persons with MS up to the level of the optimum (as practised in some EU member states and/or demanded by the leading experts in each field in European consensus).

6 Your Name Position Organisation email website Thank you for your attention!


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