This useful article below provides detail on the psychological interventions for improving quality of life in slowly progressive neuromuscular disorders.

The ENMC workshop in the article aimed to develop guidelines for supporting the wellbeing and quality of life for people with NMD, their family members and caregivers and considers:

• The lived experience of NMD
• Relevant past and ongoing researching on psychological aspects of NMD
• Current clinical practice across Europe regarding psychological interventions for people living with NMD.

267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders

Mental Wellbeing and Pompe Disease booklet

A useful resource for other Neuromuscular disorders

This was developed as a collaborative project including information from a clinical nurse specialist, a Pompe care advisor and the UK Pompe patient community. Ideas and suggestions are shared to enable people to create their own ‘mental health tool kit’ along with guidance on how to navigate services and seek out the most suitable help.

The booklet is available from AGSD-UK, or download a free PDF.