Multiple Sclerosis Community Advisory Board (MS CAB)

In December 2021, EMSP launched a new initiative called the Multiple Sclerosis Community Advisory Board (MS CAB), through which we intend to become a positive and constructive partner in the research and development of safe, effective, and tolerable treatments for MS.

Multiple Sclerosis Community Advisory Board (MS CAB)  cover image
Patient Community Advisory Boards (CABs) are groups established and operated by patient advocates and facilitated by EURORDIS, Rare Diseases Europe and EUPATI Spain, a patient education specialist. CAB members are people living with a specific condition, a close family member or carer, and a member of a patient organisation that works with the disease.

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CABs facilitate discussions on the latest developments and challenges related to medical research, as well as procedures in our disease area with the sponsors of clinical research (a pharmaceutical or biotechnology company, or a hospital or university research team). The discussions are held in a neutral setting and are structured around the principles of confidentiality, transparency, sharing, openness, optimisation of research and development, and a joint action plan as an outcome of the discussions.

The MS CAB is a representative group of dedicated MS community activists and patient advocate members from different European countries, who have knowledge of scientific, as well as policy-related issues. It offers a pool of patient experts with the aim of meeting with companies, researchers and other stakeholders to provide expert knowledge. Activities might include providing advice to optimize clinical trials for better and faster results, accelerate treatments, or a possible cure.

In 2021, EMSP managed to set up the MS CAB by identifying interested volunteers from The Netherlands, Ireland, Spain, Portugal, Italy, Romania and Croatia. We provided the training to become patient experts equipped to give advice to industry and research partners in their field of activities on a regular basis. It also helps co-create patient driven agenda for a meaningful and impactful outcome.

Through the MS CAB we would like to bring the MS patient perspective via a structured and independent platform to contribute in development of initiatives and research that impact directly the people living with MS.

In the coming years, the MS CAB will offer the following opportunities:

  • To influence the research and development pipeline for multiple sclerosis treatments so that it better meets the needs of patients and carers.
  • To increase access to, and reimbursement of, multiple sclerosis treatments across Europe.
  • To improve awareness and understanding of multiple sclerosis, both nationally and across Europe, within the healthcare system, academia, industry, and EU institutions, and among the public.
  • To recruit, train and support more individual patient advocates and experts to work within individual European countries and across the region as a whole.

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