For Patients and Families
For Patients and Families
Join our Facebook Group to share your experiences for various working groups.
Alternatively, if you have experience in any of the proposed care areas and would like to inform a working group, then please contact vanessa.christie-brown@smauk.org.uk
Our presentations and documents of interest
- Essential Information for Emergency Services When Assessing and Caring for a Child with Spinal Muscular Atrophy (2023)
Every child with spinal muscular atrophy (SMA) should have an individual Emergency Healthcare Plan (EHP). This written plan outlines key actions and information for medical teams to follow if the child becomes unwell.In some situations, families may need to take their child to Accident & Emergency (A&E) services, often at hospitals where staff may be unfamiliar with SMA. To support these teams, we’ve worked with clinical experts to develop a helpful information sheet for families to share alongside the child’s EHP. This resource provides essential guidance to help A&E staff assess and respond appropriately to the needs of a child with SMA. You can access the document here. - Adults’ Perspectives Report
This report focuses on the experiences, priorities and recommendations of adults living with SMA in the UK. These were obtained through a couple of workshops held in January 2025 in Manchester and February 2025 in London. You can read the report here.
- The Guide to the 2017 International Standards of Care for SMA
Clinicians, academics, health care professionals and patient representatives from Spinal Muscular Atrophy UK, Cure SMA, SMA Europe, Muscular Dystrophy UK and TREAT-NMD have used the 2017 care recommendations, to work together to produce a current and comprehensive medical guide aimed at people with SMA and their families.The guide can be accessed here.