European Multiple Sclerosis Platform

European Multiple Sclerosis Platform
Name	European Multiple Sclerosis Platform
Abbreviation	EMSp
Formation	1989
Type	Non-governmental organization
Status	Association
Purpose	Patient advocacy, policy, research coordination
Headquarters	Brussels, Belgium
Region served	Europe
Membership	National multiple sclerosis societies
Leader title	President

European Multiple Sclerosis Platform is a continental umbrella organization linking national multiple sclerosis societies across Europe to coordinate advocacy, research translation, and patient services. Founded in 1989 and headquartered in Brussels, the Platform connects member organizations from countries such as France, Germany, United Kingdom, Italy, and Spain while engaging with institutions including the European Commission, World Health Organization, Council of Europe, European Parliament, and European Medicines Agency.

History

The Platform was established in 1989 following dialogues between national societies like MS Society (United Kingdom), Fondazione Italiana Sclerosi Multipla, Deutsche Multiple Sklerose Gesellschaft, Federación Española de Esclerosis Múltiple and stakeholders at meetings in Brussels and Strasbourg to harmonize responses to multiple sclerosis across Europe. Early collaborations involved partnerships with research networks such as European Academy of Neurology, European Committee for Treatment and Research in Multiple Sclerosis, and academic centers at University of Oxford, Charité – Universitätsmedizin Berlin, and Karolinska Institutet to align patient services and epidemiological surveillance. Over ensuing decades the Platform expanded advocacy engagement with bodies including European Disability Forum, European Patients' Forum, World Health Organization Regional Office for Europe, and funders like European Research Council and Horizon 2020 to influence policy on access to disease-modifying therapies developed by companies such as Biogen, Novartis, and Roche. Milestones included pan-European campaigns coordinated with civil society organizations like European Federation of Neurological Associations and events at forums such as the European Health Forum Gastein.

Mission and Objectives

The Platform's stated mission emphasizes improving quality of life for people affected by multiple sclerosis through advocacy, capacity building, and evidence translation with objectives aligned to frameworks from World Health Organization, United Nations disability rights initiatives, European Pillar of Social Rights, European Disability Strategy and international research priorities set by groups like International Progressive MS Alliance. Objectives include promoting equitable access to treatments licensed by European Medicines Agency, supporting national societies such as Swiss Multiple Sclerosis Society and Norwegian MS Association in service delivery, advancing rehabilitation practices from centers like Rehab Basel, and fostering data sharing consistent with standards promoted by European Data Protection Board and European Health Data Space.

Governance and Membership

Governance is conducted through a General Assembly of member societies drawn from countries including Poland, Greece, Portugal, Sweden, and Romania with a Board elected to oversee strategy, finance, and compliance with Belgian association law. Leadership roles have been held by representatives affiliated with organizations such as MS Society (United Kingdom), Svenska MS-sällskapet, and Liga Portuguesa Contra a Esclerose Múltipla, collaborating with advisory committees that include clinicians from University College London, researchers from INSERM, and patient advocates linked to European Patients' Forum. Membership tiers encompass national societies, regional networks, and associate members, facilitating cooperation with entities like European Commission Directorate-General for Health and Food Safety, European Centre for Disease Prevention and Control, and philanthropic bodies such as Wellcome Trust.

Programs and Activities

The Platform runs capacity-building programs, educational initiatives, and campaigns addressing issues such as access to therapies, employment discrimination, and social inclusion, often in partnership with European Parliament committees, national ministries of health in Belgium and France, and professional bodies like European Academy of Neurology. Activities include organizing scientific and policy conferences at venues like Brussels Expo, convening workshops with researchers from University of Barcelona and Max Planck Institute for Human Cognitive and Brain Sciences, and producing guidance documents aligned with clinical practice from the European Committee for Treatment and Research in Multiple Sclerosis. Public awareness campaigns have been launched in coordination with media outlets and advocacy coalitions such as European Public Health Alliance and Rare Diseases Europe.

Research and Advocacy

The Platform supports and coordinates research priorities by facilitating networks among academic institutions including Aarhus University, Trinity College Dublin, and University of Copenhagen and by contributing to multicenter studies and registries like those connected to MSBase and national cohorts in Switzerland and Denmark. Advocacy work targets policy change at the European Commission, engages members of the European Parliament, and collaborates with regulatory agencies including European Medicines Agency to address reimbursement, health technology assessment processes used by bodies like National Institute for Health and Care Excellence, and real-world evidence generation with partners such as European Network of Centres for Pharmacoepidemiology and Pharmacovigilance.

Funding and Partnerships

Funding derives from membership fees from societies in countries such as Austria and Ireland, project grants from programs like Horizon Europe and philanthropic awards from organizations including European Foundation-type funders and patient-centered funds; corporate partnerships with pharmaceutical companies such as Sanofi and Merck KGaA are managed under codes addressing conflict of interest developed alongside European Patients' Forum and Transparency International. Strategic partnerships include collaborations with research funders like European Research Council, clinical networks such as European Academy of Neurology, civil society groups including European Disability Forum, and healthcare stakeholders at institutions like World Health Organization, ensuring programmatic sustainability and influence on European health policy.

Category:European medical and health organizations