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					Raising the profile of the European kidney community
Glasgow – 17 July 2006

MCI Public Affairs – The team
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Fred Soudain, Partner 15-year experience in creation & management of associations & alliances; Experience in health projects with developing countries; Speaks French, English and Spanish Mirna Cieniewicz, Consultant Works in association management, enterprise, environment & health issues; Experience in donor-funded projects (Croatia); Speaks French, Italian, Croatian and English

First steps of the alliance
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Naming the alliance Structuring the alliance Stakeholders’ chart Objectives & Tools Profiling the alliance towards policymakers Overview of current issues Proposed work programme

Your name, their perception
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Several options were discussed in the previous meetings Words used in the name should immediately ring a bell and point at the organisation’s goals Our goal: prioritise kidney health R&A: European kidney health alliance appears as best solution

General health policy context
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Health policy in Europe is decided at both national and European level Community actions complement national health policies EU brings an added value for transborder issues, i.e. free movement of patients and medical personnel; pandemics; etc. Awareness of kidney disease in EU institutions is very low R&A: Importance for the renal community to speak with one voice

Structuring the alliance (1)
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Initial EU policy audit and stakeholder mapping was carried out and presented on 28 March 2006 Renal community stakeholders were identified as patients, physicians, scientists, and nurses, and invited to join the alliance A mission statement was agreed

Mission statement
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Reducing the incidence and impact of kidney disease for the betterment of European society Raising the awareness about kidney disease as a major and increasing health threat Establishing its priority in the EU and national political agenda to promote prevention, quality treatment and research

Structuring the alliance (2)
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Priority definition, strategic guidance, contacts with high-level policy-makers are the main responsibilities of the Steering Committee Close involvement in EU activities, execution of the alliance’s activities (bringing kidney expertise to the public affairs team), contacts & representation of the alliance with EU officials in meetings and conferences are the main responsibilities of the Management Committee R&A: Time and energy are the resources you will be asked to put in the alliance, it should guide your involvement

Structuring the alliance (3)
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Reporting mechanisms Decision-making mechanisms Interaction between health experts and public affairs advisers R&A: Our recommendations

Structuring the alliance (4)
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From a legal point of view, two options are available:
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Creating a non-profit organisation under Belgian law (aisbl) Drafting a Memorandum of Understanding (MoU) among the members of the Alliance

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R&A: Start by signing a MoU among parties, possibility to then evolve towards an organisation when considered necessary

Sections of the MoU
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Table of content Introduction, Context Objectives & Scope Financial arrangements Consensus-building Amendment Duration, withdrawal & Termination Organisation & Management
(incl. decision-making process)

Representation Effective Date & Signature

Optional (legal disclaimer, contractual arrangements, worksharing, disclosure and use of technical information, languages, )

Main objectives for the alliance
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Raise the visibility of the kidney disease cause and its links to other diseases Prioritize kidney disease on the EU health policy agenda Provide and share information with the kidney community Advise on actions to be undertaken

Stakeholders’ chart
OPINION FORMERS POLICY MAKERS

NGOs
Employers (EU Level) - UNICE European Commission - DGs - Cabinets European Parliament - Committees - Political groups - Plenary

Kidney Community

Council of Ministers - Working groups - COREPER - Ministers

Industry

Permanent Representations

Trade Unions (EU Level) - ETUC

Advisory Committees

Trade associations

The EU press corps

Objectives & Tools (1)
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Quarterly overview on alliance’s work progress
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Roadmap, incl. actions and results Monthly Bulletin Detailed issue sheets Monitoring list EU policy reports on latest developments Calendar of meetings EU tracker

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Monthly information on EU activities
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Alerts on funding opportunities for projects
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Objectives & Tools (2)
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Alliance’s visibility & influence
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Fact sheets, survey results Press review Alliance’s press releases Position papers & Contributions to the debate Participation & organisation of events Reporting on meetings with EU officials, next steps Create & update of a Who’s who directory

Profiling the alliance
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Overall objectives are set We believe they are feasible Profiling is about communication To communicate in an efficient way, you need to know what you want to say, who you want to say it to, when and how you are going to say it R&A: Develop your position

Overview of current issues
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Distinguish programmes from legislation Policy consultation & Regulatory initiatives Programmes provide funding opportunities for raising the awareness of kidney disease, deepening research, and training of researchers / nurses

European Commission’s initiatives
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Green Paper on healthy diets & physical activity COM(2005) 637 ISN submitted its response Open consultation on Organ donation and transplantation for policy options at EU level Deadline: 15 September 2006 World Kidney Day in 2007 – Action for the alliance at EU level EC Health Indicators (statistics) e-Health activities R&A: Multiply answers to all related health consultations to rapidly raise the profile of the alliance – Become a valuable information source to EU

Current EU legislation
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EC directive 2006/17/EC on certain technical requirements for donation, procurement and testing of human tissues and cells Review of EC directives on medical devices (MDD, AIMDD, IVDD)

EU programmes
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Community Action Programme for Public Health 2003-08 Proposal for a Community Programme for Health & Consumer Protection 2007-13 Proposal for FP7: Cooperation, People, Ideas, Capacities specific programmes

Community Action Programme for Public Health 2003-08
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Three general objectives:
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General information Rapid response to health threats Health promotion through health determinants

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Activities encompassed networks, co-ordinated responses, sharing of experience, training and dissemination of information and knowledge It is no longer possible to submit applications for 2006 (deadline 19 May 2006) Executive Agency based in Luxembourg R&A: Prepare useful general information for submitting applications from 2007 onward (meeting with agency, scanning of successful projects, etc.)

Proposal for a Community Programme for Health & Consumer Protection 2007-13
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First joint programme for health & consumers Current budget is 1,203bn EUR but could be raised to 1,500bn EUR New actions: bacteria resistance, prevention for socially isolated individuals / immigrants, drug scrutiny, disability, nutrition, etc. Council’s reading pending R&A: Provide EU institutions with stakeholders’ input on the programme

Proposal for 7th Framework Programme for R&D (FP7)
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Cooperation programme – Health section:
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People & Ideas programmes:
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Microalbuminuria as risk marker Transnational research opportunities
Training Conference activities

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Cooperation programme:  Scholarships, fellowships, complement activities to the Cooperation programme R&A: 1) Obtain the detailed research agenda 2) Inform the alliance on the topics and programmes relevant to the renal community 3) Inform the alliance about the EU tender procedure for research projects

First conclusions
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There is little EU legislation which has an impact on the renal community so far. Need to raise its profile towards policy-makers by active participation to health-related EU consultations and participation to health events. First objective is to develop opportunities in existing programmes by raising the renal priority.

Proposed next steps
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By September 2006:
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Organisations to agree on participation to the alliance, name their members in the 2 committees Team to gather further intelligence on EMEA activities and neighbouring EU health campaigns (obesity, diabetes, etc.) First deliverables are sent to Management Committee First meeting of the Management Committee Definition of the work programme for 2006-2007 Prioritisation of issues / Action plan First meeting of the Steering Committee

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Mid-September 2006:
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December 2006:
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