Care Standards for SMA


Standard of Care in SMA


Revised standards of care were published in 2017. Coordinated by Treat-NMD, SMA Europe has worked with members of other organisations, on a version for families 


Relevant initiatives that led to the revision of the standards of care 2017:


SMA Europe together with Cure SMA in a collaboration is driving the revision of the 2017 standards of care.


Multidisciplinary Care

Individuals living with SMA should receive care from a multidisciplinary care team which may include specialists in:

  • neuromuscular conditions
  • palliative care
  • respiratory medicine
  • physiotherapy
  • occupational therapy
  • speech & language therapy
  • dietetics
  • psychology
  • pain medicines
  • hospital or community consultant paediatrician

Where available, a key worker should assist in the coordination of services for the family. The coordination of this multidisciplinary team is done by a specialised case/care manager. Explore the boxes below to find out more...


Specialist care teams


A neurologist is a physician specializing in neurology and trained to investigate or diagnose and treat neurological disorders, including SMA. Neurologists may also be involved in clinical research, clinical trials, and basic or translational research.

Occupational therapy

Occupational therapy is profession within healthcare. It is the use of assessment and intervention to develop, recover, or maintain the meaningful activities of individuals. 

Speech therapy

Speech therapists specialize in the evaluation, diagnosis, and treatment of speech and language, cognitive-communication, voice, and swallowing and impairments.


Psychology is Psychology includes the study of conscious and unconscious phenomena, including feelings and thoughts. It is an academic discipline of immense scope, crossing the boundaries between the natural and social sciences. Psychologists seek an understanding of the emergent properties of brains. As a social science, psychologists aim to understand the behaviour of individuals and groups.

Orthopedic & rehabilitation technician

An orthotist is a healthcare professional who specializes in the provision of orthoses. In some countries they are clinicians trained to assess the needs of the user, prescribe treatment, determine the precise technical specifications of orthotic devices, take measurements and image of body segments, prepare model of the evaluation, fit devices and evaluate treatment outcome.