Objective I : Lobbying and Awareness Raising
Background to the objective	Although most of the relevant legislation in the health field is in the competence of the national governments, European legislation gains more and more importance in many areas of interest for PwMS. EMSP is seen as best placed to directly influence the shaping and the implementation of this European legislation with relevance to PwMS. Furthermore, support for lobby work done at a national level by the MS-Societies should be provided by EMSP where ever possible. Activities: 1. Propose, monitor and enforce adequate guidelines and legal framework aiming at the improvement of the quality of life of people with MS 2. a) directly ( by legislation or measures having an immediate effect on the life of PwMS, e.g. in the field of mobility by the “European Directive on Buses and Coaches”) or 3. b) indirectly (by legislation or measures having an effect on patient advocacy groups such as the MS Societies and /or EMSP ) 4. Raise awareness on the specific problems of PwMS both among the representatives of relevant European public bodies (European Commission, European Parliament, Council of Europe) and private organisations (European Disability Forum (EDF), European Citizen Action Service (ECAS), European Pharmaceutical Industry and Associations (EFPIA), European Federation of Neurological Associations (EFNA) and others
How the objectives will be achieved	• Monitor and analyse policy developments in all areas affecting the work of MS-Societies • Drafting of policy documents and active lobbying of relevant European institutions • Sharing and co-ordinating lobby aspects with like-minded (international) organisations • Ensuring that lobbying aims and plans are accepted & supported at the level of EMSP members • Maintaining an active dialogue with the Commission, the Parliament, the Council of Ministers, the Council of Europe and the pharmaceutical industry In order to achieve any of the lobbying goals, EMSP needs to have a profile and rely on visibility on European level. Both can be achieved through: • Publication of policy documents and research papers • Publication of newsletters and web-documents • Commentaries in non-EMSP publications • Organising European seminars and conferences through which ideas can be collected and formulated • Involve the EMSP members in all lobbying efforts • Increase the number of EMSP members in order to be able to speak on behalf of a vast majority of PwMS in Europe as a geographical unit
How success will be measured	• Lobbying goals are very difficult to benchmark. Proposed are the following: • Ensuring by personal well prepared visits within the next 12 months that all members of the “Disability Intergroup” of the European Parliament are aware of the work of EMSP and its members • Establish a network of 10 other MEPs in influential positions within the next 12 months who are well informed about MS related problems and our work to fight them • Participate actively in all EFPIA Think Tank meetings and keep the EMSP members informed about the work done there • Participate actively in the lobbying efforts organised by EDF where ever possible and of interest for PwMS • Set up an information event on current MS related issues once minimum once a year and invite all relevant MEPs, officers of the relevant Directorates in the Commission, the EMEA and sponsors and donors of EMSP
Objective II: Facilitating Pan-European Projects (both funded and non-funded)
Background to the objective	Promoting cross-border co-operation between members is a major reason for the existence of EMSP. Learning from each other by working together through a Pan-European project means that several members agree to invest time, labour and maybe funds to reach a defined result by common work for a limited period of time. The European Commission regularly invites European project proposals financially supported by them. Subjects of interest for Ms-Societies and PwMS can vary from “Non-discrimination of disabled” to “Internet based communication, -learning and –trade”, from “Voluntary service in the social sector” to the “Further development of civic society issues in the emerging countries of Central-and Eastern Europe”, from “Research in the field of degenerative and chronic diseases” to “2003 – European Year of the Disabled Citizens”, to name just a few subjects. Beside these opportunities for funded European projects there is both need and opportunity for non-funded European or multilateral projects, e.g. the study / questionaire of EFPIA on “Access to new medicines in Europe done in winter 2000/2001. Both types of projects require - sufficient information on time - some guidance and co-ordination which EMSP will provide. However, responsiveness and a willingness by members to take on work additional to the regular domestic issues is vital for the success of such cross-border projects.
How the objective will be achieved	EMSP • monitors the relevant bulletins and websites on EU-funded Action programmes inviting for projects relevant for PwMS • disseminates information on such opportunities via newsletter, website, special meetings and direct mail to members for further action on their side • provides support (contacts, forms, further information) on request • suggests a minimum of one major EU-funded project per year with detailed background information • promotes skills-share among members
How success will be measured	EMSP intends to • facilitate a European funded project once every two years • facilitate one non-funded European/multilateral project once a year • check the satisfaction of its members with the information provided on European project opportunities once every year
Objective III : Providing information both from internal and external sources
Background to the objective	EMSP shall provide useful Information on all issues of relevance for MS-Societies and their members, which are • carefully selected through the eyes of the potential user • made “digestible” by summary when necessary • disseminated early enough to allow appropriate time for (re)action
How the objective will be achieved	Procuring of information • by written information material from external sources such as bulletins of the European Commission or Parliament, newsletters from other pan-european organisations such as EDF, ECAS, EFNA, EFPIA, Alzheimer Europe, Inclusion Europe etc • by oral information during external conferences, seminars, visits etc. • by written material or oral information coming from internal sources (EMSP members, partner MS-Societies, IFMSS, RIMS, ECTRIMS) Disseminating of information • by EMSP newsletter 3 – 4 times a year • by direct mail (post mail, e-mail, fax) • by our website • by international conferences
How success will be measured	• check the overall satisfaction of EMSP members with the information provided once every year • ask for areas and ways of presentation which need improvement