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EMSP_FY2013 [EMSP_FY2013] [20123302] - Operating Grant
Mission and vision of the operating grant holder

Founded in 1989, EMSP is the umbrella organisation representing 38 national MS societies from 34 European countries. EMSP represents their interests at European level and works collectively with its members to achieve our goals of high quality equitable treatment and support for Persons with Multiple Sclerosis (PwMS) throughout Europe.

EMSP vision is to move from high quality treatment and support for all PwMS in Europe to a world without MS!

EMSP`s mission is to ensure the development and the implementation of high quality standards of treatment and support for PwMS, their families and their carers in Europe, to allow them to lead their life independently and to recognise them as equal members of the society.

EMSP work priorities to achieve this mission are to:
- influence EU institutions and other decision-making bodies to improve their quality of life for PwMS;
- network with other European organisations which share of vision of truly patient centred approach;
- provide MS member organisations with information on relevant EU draft legislation and how we can influence it, and evidence - based projects that will contribute to their work;
- develop and promote recommendations for improved medical treatment and rehabilitation to be implemented in the EU member states and other countries;
- encourage coordinated research aiming to benefit of PwMS;
- initiate and implement cross-border projects to improve the living conditions of PwMS (e.g. in the field of therapies, employment, social security, infrastructure, etc.);
- act as an information platform by exchanging knowledge and best practices relevant to the work of the national MS member organisations;
- enhance a general awareness on MS by informing and educating external audiences;
- and to support national MS Societies, both recent and long-established, in Europe.

Strategic objectives and specific activities

In 2011, EMSP established five goals for its activities for 2012-2014 (cf. EMSP Strategic Plan 2012-2014).

To promote equity and access to high quality health and social care and support for PwMS, their families and their carers, regardless of where they live; or their economic status.

To strenghten EMSP as the repreentative European voice of PwMS, working in genuine partnership with other stakeholders and empowering member organisations to contribute to and benefit from EMSP as their platform.

To promote the empowerment of PwMS at individual, organisational and policy level to represent and advance their collective interests, acknowledging their unique experience and expertise as PwMS and co-deciders in their care.

To encourage the MS Research agenda at European level and promote European data collection and comparison that puts patients at the centre and provides the evidence base for advancing MS policy and practice across Europe.

To pursue excellence in EMSP`s performance and delivery through effective management, organisational development and evaluation of its human resources.

In addition to EMSP`s core business as an organisation, four priorities areas have been identified as a focus for the next 3 years:
1. Optmising the European Year of the Brain 2014 to advance our strategic goals
2. Enlarging the European Registry for MS
3. Enhancing EMSP`s approach to strategic partnerships and relationship building over the next three years; developing an MS ambassador Programme to ensure stronger and systematic involvement of MS leaders at national and European level.
4. Developing EMSP`s management and organizationally structure and Human Resource Management requirement

The draft operational work plan for 2013 provided by EMSP with this proposal is currently being further developed by EMSP ExCom.

Expected outcomes

EMSP`s approach to plan and to evaluate its work is to start with the overall work priorities as outlined under "Vision and Mission" (Page 3), followed by strategic goals and priorities areas as outlined at "General objectives of the organisation and its main activities" (Page 8) followed by more specific objectives for the year as outlined in our Operations Plan:

Key Operational Actions contributing to this objective are:
1) Facilitation of a meeting between neurologists (members of national medical advisory boards)and EMSP ExCom as European body being responsible for patient advocacy on European level with more or less strong impact and participation of national level. Method: short PPPs to EMSP activities, followed by discussion. Expected results are better mutual understanding on overlapping & diverging interests & closer cooperation between national & European level.
2) An EU-wide campaign promoting EMSP`s MS Nurse Online Training being the first & only CME accredited training for MS nurses in Europe (being developed in cooperation with the International Organisation of MS Nurses (IOMSN) and Rehabilitation in Multiple Sclerosis (RIMS).Expected results: Better services for PwMS, better adherence to the prescribed therapies by PwMS, better knowledge on the unmet needs of PwMS for the development of therapies and services being of greater relevance for PwMS as well as decrease of single sponsor education of MS nurses as hidden marketing tool of pharma companies.
3) Dissemination of Annual Report 2012 will improve visibility of EMSP and national MS Societies and increase the understanding of their needs.
4) A Networking event gathering together stakeholders for an update on EMSP operations plan, actions and initiatives. Expected result is a better mutual understanding of working priorities and overlapping or diverging interests.

1) Regular involvement of MS patients / patient advocates in EMA activities through the Working Party for Patients and Consumer Organisations as well as through testimonials in Scientific Advisory Groups. Expected result: EMA services and decisions reflecting the needs of the patients as end-users of drugs being approved or not approved by EMA;
2) Continued promotion of the inclusion of patients/patient advocates into national health policy decision making processes (including HTA).

1) COUNCIL MEETING (General Assembly)with update on all current projects and activities and the discussion of the relevance for the individual member organisation and/or PwMS;
2) Running of our Membership Satisfaction Survey plus assessment as the base for action.

1) More regular & more detailed newsletters to members & interested stakeholders, on-going improvements on the websites (one general website, several ones for projects)and the increased use of Social Media to spread information and obtain feedback (especially to/from Young Persons with MS);
2) EMSP booth at ECTRIMS, the biggest conference and exhibition event of MS medical experts and industry in Europe, with EMSP material and EMSP staff providing information and answering questions;
3) EMSP booth at RIMS Annual Meeting as key event of MS Centres and Rehabilitation experts in Europe.
4) Internal staff restructuring leads to higher priority on internal communication with members for both senior (Dep. CEO) and junior staff (stagiaire).

Key Operational Activities contributing to this objective are:
1) A better collaboration between persons in charge for accounting, bookkeeping, VAT advice and auditing of EMSP finances (both external and internal): Expected results will be better correlation between quarterly finance reports and ExCom meetings as controller;
2) Earlier & more regular finance planning;
3) Proactive diversification of income sources.

Start date: 01/01/2013
End date: 01/01/2014
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 279 858,00
Portfolio: Rare diseases