The research in the field of neuromuscular diseases is conducted following the principles of inclusive, participatory, action research. There is a special focus on understanding and strengthening integrated care for neuromuscular disorders. The research goal is achieved by qualitative exploration of the health care and support needs along the life course and care trajectory of individuals with neuromuscular disorders and their parents/caregivers. The next step in the process is the participatory development of a conceptual health services intervention, through co-creation with all stakeholders (patient groups & providers policy stakeholders). The outcomes of this project will prepare for future research aiming at testing the system strengthening intervention in different contexts, evaluating the potential for sustainability and scalability, performing a critical analysis for scaling up intervention strategies to different health systems (countries) and different age groups, and formulate “lessons learned”, and making a critical analysis of the transferability of our approach to other neurological diseases.