We are launching an international patient survey to capture the lived experiences of up to 140 people across multiple LGMD subtypes. The aim is to identify patterns in access to care, treatment satisfaction, and daily quality of life, and to understand how these experiences differ between countries.
The results will be used in a scientific article and presented at the ENMC workshop on cardiac care in November 2026. By bringing the patient voice directly into this workshop, the findings will help improve clinical communication and guide future patient engagement. The outcomes will also contribute to the development of a dedicated masterclass for cardiologists treating LGMD patients, in partnership with Treat NMD.
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Help shape better cardiac care for people with LGMD!