Chair :

Marianne Nordstrøm

Co-chairs :

Andreas D. Rosenberger, Hanne Ludt Fossmo, Kristin Ørstavik

Multidisciplinary Management and Care workshop in Norway – May 2023

The focus of the working group is to promote, standardize and validate multidisciplinary management and care for NMDs by means of:   

• Facilitate international multidisciplinary research 
• Standardization and validation of clinical outcome measures including patient reported outcome measures 

• Patient/family centered care and empowerment 
• Cross cutting with other working and specialty groups  

The specialty group is open to all professions involved in management and care of NMD and aim to develop activities to cover the areas: 

• Rehabilitation 
• Physical and occupational therapy
• Speech therapy and oral health
• Dietetics
• Nursing  
• Psychosocial aspects 
• Social work 
• Cognitive assessments and management 
• Palliative care 

A first workshop of the multidisciplinary management and care group was arranged at Frambu Resource Centre for Rare Disorders, outside of Oslo in Norway on 4th and 5th of May 2023. The workshop gathered speakers with extensive experience in NMDs and specialty group members with the aim of sharing knowledge and developing activities within the multidisciplinary group.

The workshop program is available here, and the final report is available here.

Core group formed by area representatives 

Rehabilitation:  Nicole Voet, Radboud University Medical Center, the Netherlands 

Nursing: Karin Håkansson, Sahlgrenska University Hospital Gothenburg, Sweden 

Physiotherapy: Andreia Rocha, Centro Hospitalar Universitário de Santo António, Portugal   

Nutrition: Marianne Nordstrøm, Oslo University Hospital and the National Consortium on Rare Neuromuscular Disorders, Norway 

Patient representative: Patricia Melsom, Norway