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Living well with progressive multiple sclerosis: rehabilitation to improve functioning and wellbeing

To develop and evaluate a new community-based comprehensive, holistic, goal-oriented multi-symptom rehabilitation programme tailored to the needs and circumstances of each individual.

Contact person

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Despite medical advances, people with Progressive Multiple Sclerosis (pwPMS) continue to experience symptoms that cause poor quality of life and reduced wellbeing. These symptoms negatively affect their personal, social and professional lives, and the psychological wellbeing of their carers and/or family members.

This project was inspired by the day-to-day difficulties pwPMS and their families face because of the multitude of symptoms that disrupt patient lives, and an acknowledgement of the challenges we as a research and clinical community have faced to fully address these concerns. Rather than continue to pursue a research agenda that focuses on individual symptoms one at a time, we have listened to pwPMS and their desires, and have been ambitious in our goal: to develop and evaluate a new symptom management programme.

Organisational structure

We are an experienced, multidisciplinary team of people with MS, neurologists, psychologists, nurses), occupational therapists, physiotherapists and physiology experts, rehabilitation medicine, health economists, and trial methodologists from 8 countries (Norway, USA, Belgium, Denmark, Italy, Canada, Australia, and UK) with a shared vision to improve the wellbeing of people with progressive MS.

Key Factors

Project duration

2024 - 2025


International Progressive MS Alliance

Cooperation partners

University of Nottingham, UK (Nikos Evangelou & Lauren Taylor)
KU Leuven, Belgium (Daphne Kos)
Cardiff University, UK (Emma Tallantyre)
University of Melbourne, Australia (Claudia Marck)
University of Verona, Italy (Michela Rimondini, Silvia Poli)
University of Bergen, Norway (Lars Bø)
Aarhus University, Denmark (Ukrik Dalgas)
University of Plymouth, UK (Jenny Freeman)
Queen’s University, Canada (Marcia Finlayson)
Cleveland Clinic, USA (Dan Onteneda)
Italian MS Society Foundation, Italy (Giampaolo Brichetto)
National MS Center of Melsbroek, Belgium (Piet Eelen)
University of Leeds, UK (Amanda Farrin)
Patient partners: Italy (Federico Bozzoli) and UK (Helena Jidborg)