Page last updated: 11th June 2024

Since the publication of the International Standards of Care for SMA (SoC) in November 2017, new disease-modifying treatments have brought rapid change and many unknowns. Though the SoC are still a key reference, care and management of a person’s condition is very individualised. It is based on assessment by and discussion with their clinical team.

Clinicians nationally and internationally are constantly reviewing and discussing best care and management practice. Some recommendations are now changing and work to review these guidelines has started.

Clinical Publications:

The 2017 SoC were published in these articles::

• Diagnosis and Management of SMA: Part 1 Recommendations for diagnosis, rehabilitation, orthopaedic and nutritional care
• Diagnosis and Management of SMA: Part 2 Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics

The family-friendly guide :

• The Family Friendly UK Guide (pdf) 
• Some translations are available – see the bottom of this page.

Chapters online:

• Introduction >
• Genetics and Diagnosis >
• Orthopaedic Management >
• Physiotherapy & Rehabilitation >
• Nutrition, Growth & Bone Health Intro >
• Breathing (Respiratory & Pulmonary Care) Intro >
• Other Organs and Systems >
• Medication >
• Emergency Care >
• Anaesthetics >
• Administration of new treatments for SMA (in 2017) >
• Ethics & Choices >
• Useful resources >
• Appendix 1 (Inheritance patterns) >
• Reference List >

SMA UK was pleased to have been a very active member of the international group that worked on the project to produce this family guide. We remain grateful to all the people who generously allowed their photos to enrich the UK version.

These articles and this guide replaced the original Standards of Care 2007 which were published as a family-friendly version in 2008.