Multidisciplinary Management & Care

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

Berradja Sara Rehabilitation specialist France
Bozovic Ivana Babic Neurologist Sloveina
Dambrauskienė Milda Pediatric neurologist Lituania
Edofsson Ulrika Occupational therapist Sweden
Ferreira João Miguel Alves Student/ researcher Portugal
Fossmo Hanne Ludt Physiotherapist Norway
Håkansson Karin Specialist nurse Sweden
Hamedami Mehrnarz Physiotherapist Italy
Handberg Charlotte Senior researcher Denmark
Jazepcikiene Edita Physiotherapist Lituania
Lace Baiba Rare disease supp. dept head Latvia
Melsom Patricia Patient representative Norway
Nordstrøm Marianne Clinical dietitian and researcher Norway
Ørstavik Kristin Head of section, MD, PhD Norway
Rocha Andreia Sara Da Silva Physiotherapist Portugal
Rosenberger Andreas Dybesland Head of centre, neurological physiotherapist Norway
Schenone Angelo Neurologist Italy
Smink Tineke Physiotherapist Norway
Voet Nicole Rehabilitation physician Netherlands
Vrscaj Eva Medical doctor, paediatrics resident, clinical research assistant Slovenia

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
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