The role of EMSP Eva Havrdova EMSP Executive Committee member Czech Republic

EMSP The European Multiple Sclerosis Platform (EMSP) was formed in 1991 and has four main aims:  to exchange and disseminate information  to encourage research  to promote the development of joint programmes between MS societies  to act as a focal point for liaison with pan European bodies

EMSP's mission is... ... to exchange and disseminate information relating to multiple sclerosis considering all issues relevant to people affected by MS; .. to encourage research of all kinds that is appropriate to multiple sclerosis through recognised medical and other organisations;

... to promote the development of join action programmes with the participation of national MS societies in Europe, aimed at improving the quality of their activities and services;

... to act as focal point for liaison with the institutions of the European Union (EU), the Council of Europe and other European organisations, in order to study and propose measures to improve the autonomy of handicapped persons and promote their full participation in society.

WHY? More than citizens affected by Multiple Sclerosis are asking for equal high quality treatment and care across Europe...

1st European MS Awareness Day 25* June 2002 in Brussels Barriers to access to care and treatment – the perceptions of European Multiple Sclerosis Societies differencies in Europe first time openly stressed „in the field of healthcare we regret to note that the current situation is still very far from the model of European Citizenship, which guarantees equal social rights to everyone enjoying the status of EU-citizen“ Peter Kaufeldt, EMSP President 2002

MS Barometer  accurate picture needed about the situation of people with MS across Europe  demonstrates the differencies in how MS is managed between various countries  permits identification of what aspects of the disease are well-managed  highlights in which areas national administrations need to improve their policies and practices

Structure of the Barometer partially based on Code of Good Practice Extensive transnational consultation with the medical and patient communities to finalize content

MS Barometer 23 countries represented vast differencies identified positive and negative aspects in each contribution maximum scoring of 270 points

MS Barometer – overall results

MS Barometer – access to treatments

% PwMS receiving DMDs

MS Societies having consultative status with the national administration

The European Code of Good Practice The Aaltonen Report of the European Parliament: among and even within the Member States of the EU vast inequalities exist for people with MS in accessing optimal therapies and services needed for the management of this devastating disease. The situation is such that one’s location in Europe determines the type of treatment received. This cannot continue. - Each national administration of the 27 Member States should co-operate in implementing nationally the European Code of Good Practice in MS and its recommendations in treatment, rehabilitation, care and quality of life aspects. - Brussels, October 2007

Ax excursion into the brain anatomy and physiology Amygdala and hipocampus emotions and memory try to strengthen the memory pathway hippocampus

Example: % of patients need 2 canes to walk 100m in years of MS Without treatment yrs. %

Let‘s exchange and share our experience It is important to act quickly

There is no place for giving up !