The European Multiple Sclerosis Platform (EMSP) is a Pan-European umbrella organization with over 30 years of expertise. They work together with our members and our partners to ensure that the more than 1 million people living with MS in Europe, have a real voice in determining their own priorities. They rely on a growing network of 43 member organisations from 37 European countries.
The needs of the 1 million people with MS in Europe are the main focus of their advocacy and awareness-raising campaigns to influence European decision-makers and EU policy-makers. They gather data and provide knowledge and expertise to relevant stakeholders and encourage high quality research and the dissemination of excellent, evidence-based information on MS .
Multiple sclerosis (MS) is one of the most common long-term conditions affecting the central nervous system (brain and spinal cord) and the main cause of non-traumatic disability in young adults.
MS is associated with loss of myelin, which is a sheath that forms around the nerves. Less myelin leads to disruptions in the transmission of electrical impulses to and from the brain, causing MS symptoms. The sites where the myelin is lost appear as scars. This is why multiple sclerosis means, literally, many scars.
MS is most frequently diagnosed in people aged 20–40 years. It is an unpredictable disease that each person will experience differently, but common symptoms often include
- reduced mobility and
- cognitive dysfunction.
The cause of MS is not known and there is currently no cure. However, timely diagnosis, treatment and support have a significant effect on disease progression and quality of life, regardless of the type of MS.
Today, there are more than 1,2 million people living with MS in Europe.
EMSP’s flagship projects aim to improve quality of life of people with Multiple Sclerosis, as well as to ensure that they receive high quality equitable treatment, care and can access employment:
- The MS Barometer is a comparative survey collecting key data on Multiple Sclerosis in over 30 countries in Europe. It serves as a benchmarking tool to provide an accurate picture of MS management across Europe. The Barometer results will serve to improve the health and social care systems outlining areas for improvement and encourage decision makers to take actions to improve the quality of life of people affected by multiple sclerosis.
First launched in 2008, the MS Barometer is a collection of MS data gathered by national MS societies and centralised by EMSP – it reached its 6th edition in 2020. https://msbarometer.eu/
- MS Nurse PROfessional is the only European-focused, e-learning training curriculum for MS nurse specialists and nurses who work with, or would like to work with, people with MS.
The MS nurse is key in the provision of expert and consistent information, support and advice for people with MS. From the moment of diagnosis and throughout the disease trajectory, the nurse ensures a shared and coordinated approach to care. Across Europe, the role, skillset and professional development of MS nurses varies. This leads to inequity of access to expert nursing care and advice, and inequality of patient care experience.
Since 2012, more than 8,000 nurses have joined the e-learning programme. Currently available in 12 languages and launched in 15 European countries, MS Nurse PRO is an online training that has international accreditation and endorsement from national and international patient and professional groups. The training has been created by a team of internationally recognised nurses and neurologists.
MS Nurse PRO successfully trains qualified nurses who work in the field of MS, contributing to improved healthcare for people with MS in all regions of Europe and beyond. By equipping MS nurses with the skills and knowledge they need, the MS Nurse PRO will create a positive change in MS care that extends across the entire multi-disciplinary care team.
EMSP is also working collaboratively with the MS nursing community across Europe to develop a European MS nurse community that will promote and share their best evidence-based practices, advances in MS care and exchange of peer group support and professional development.
- The Multiple Sclerosis Data Alliance (MSDA) is a multi-stakeholder collaboration working to accelerate research insights for innovative care and treatments for people with MS. The MS Data Alliance envision a patient-centred learning health system in which all stakeholders contribute and use big data to co-create the innovations needed to advance the timely treatment and care of people with MS. One of the main objectives of the ‘Multiple Sclerosis Data Alliance’ (MSDA) is the implementation of a minimal data set and quality standards, approved by the European Medicine Agency (EMA), in as many MS data registries and cohorts as possible. Improving the collection and analysis of real-world evidence can lead to better informed policy and decision makers, regulators, patients and better research outcomes.
MSDA aims to influence a mind-shift on the vital importance and multifaceted usability of good-quality real world data – urgently needed as additional evidence for proper decision making by health authorities. It is designed to boost research and enable better outcomes for the broader MS community with a focus on Patient Reported and Patient Relevant Outcomes (PRO).
In 2020, as the COVID-19 pandemic unfolded across the globe, the demand for data on the impact of the novel coronavirus on people with Multiple Sclerosis (MS) was growing rapidly. This information is crucial for people with MS and clinicians to make evidence-based decisions on how to manage their condition during the pandemic or in case of a COVID-19 infection.
Consequently, MS Data Alliance and the MS International Federation (MSIF) have teamed up to set up a Global Data Sharing Initiative and called for individuals and organisations across the global MS movement to get involved.
If you would like to learn more about the MSDA please visit this website: https://msdataalliance.com/
If you would like to read more about the Global Data Sharing Initiative click here: https://msdataalliance.com/covid-19/covid-19-and-ms-global-data-sharing-initiative/
- Multiple Sclerosis is the most common disabling neurologic disease amongst young people. Therefore, EMSP has been actively supporting the youth from the very beginning to ensure that they have a strong voice in determining their own objectives and priorities. A result of which is the EMSP Young People’s Network (YPN), a network of young people living with Multiple Sclerosis. They are passionate about changing society and making a positive impact on the lives for young people with MS. In the past nine years, the YPN has grown in numbers and strength, and today we are proud to have over 100 members from across Europe on board.
- The recommendations for Paediatric MS Caregivers – The International Paediatric MS Study Group states that an increasing number of cases of Multiple Sclerosis (MS) in children and adolescents have been recorded worldwide.Between 3-11% of MS cases are now diagnosed before the age of 18. With the increasing number of paediatric MS cases, there is a growing need for the provision of care for children and adolescents with MS. However, due to the recency of an emerging need and lack of data on paediatric MS, there is a vacuum in policy and action regarding how to support best those children and adolescents with MS and their families who are key carers.
To address the emerging needs, in 2018, EMSP initiated the project “Recommendations for Caregivers of Paediatric MS” that aims at improving the quality of care received by children and adolescents with MS and address the challenges faced by caregivers.
On 20 November, 2019, World Children’s Day, EMSP published the “Caring for Children and Adolescents with Multiple Sclerosis: Exploring the unmet needs and existing supports for paediatric multiple sclerosis caregivers” report, which identified the main needs of caregivers of children and adolescents living with Multiple Sclerosis.
More information about the project: http://www.emsp.org/projects/caregivers-of-paediatric-ms/
- The N2B-patch project is a European Union’s Horizon 2020 Research and Innovation programme-funded project that has received funding under the grant agreement No. 721098 and started in January 2017. N2B-patch stands for “Nose-to-Brain-patch”. The consortium aims to develop an innovative technology for multiple sclerosis (MS) treatment by developing a ‘nose to brain’ delivery system which will avoid the need for injections and oral medicine. The direct transport route from the nasal cavity to the brain, bypassing the blood-brain barrier, could potentially offer an innovative method for central nervous system drug delivery. The long-term objective is to improve treatment of people with MS. Science, industry and patients’ representatives work hand in hand in order to achieve the project objectives and maximise impact for patients and their relatives, healthcare professionals and European industries.
Supporting research in the field of MS remained one of EMSP’s three pillars after 30 years. With our active involvement in the EU-funded scientific project of Nose-to-Brain-patch (N2B-patch), EMSP enabled the inclusion of patients’ perspectives at an early stage of this scientific project. The new generation of researchers ask the persons affected by any disease about products that the scientists intend to develop for those affected by the disease.
In N2B-patch EMSP does exactly that. They are making sure to bring the questions and expertise of MS community to the table, as well as to keep their members and wider society informed about the innovative outcome of this multi-stakeholder project. More about the project https://n2b-patch.eu
- In 2019 EMSP joined forces to support EURORDIS and other partners of the HTx project that envisions a new generation of healthcare decision-making. The main aim of HTx is to create a framework for the Next Generation Health Technology Assessment (HTA) to support patient-centered, societally oriented, real-time decision-making on access to and reimbursement for health technologies throughout Europe.
The University of Bern, who is one of the Consortium partners in HTx project, is working on this shared patient and doctor decision-making model. A team of researchers is working to create a framework that incorporates evidence from clinical studies and real-world data from large groups of patient participants By applying statistical models they aim to identify the most optimal treatment option that minimises the relapse rates for the relapsing-remitting form of multiple sclerosis, after taking into account the characteristics of the studied participants with MS. The methodology is under development, but early applications in comparing the effectiveness of three drugs show promising results.
If you would like to learn more, please visit HTx website: https://www.htx-h2020.eu/
- MSatWork.life is a platform of information, tools, events and networking providing people with MS, employers, healthcare professionals and decision-makers with the instruments to overcome the challenges.
EMSP worked on a wide range of projects to facilitate participation of people with MS in the labour market: Believe and Achieve; Paving the Path for Participation (PPP); Ready for Work & Code of Good Practice in MS. Our employment-focused materials are available now in one place and in an accessible format at this online hub.
MS@Work aims to raise awareness on the needs of people with MS for better access to employment and social care, to facilitate access and use of the outcomes of EMSP employment initiatives developed by EMSP during the last 20 years and a space that highlights the value of work to people with chronic illnesses.
For more info: https://www.msatwork.life/