In 2024 EFNA conducted a comprehensive survey to uncover the invisible issues faced by the neurology patient community– issues that remain largely unrecognised by the general public, policymakers, and health system leaders. The survey data has now been re-analysed with a specific focus on rare neurological conditions.

The most represented rare neurological conditions among respondents were myasthenia gravis, dystonia, and Charcot–Marie–Tooth disease (CMT), with additional responses covering a wide range of other rare neurological conditions.

Respondents reported a high burden of frequent multi-system symptoms and the findings highlight the pervasive and ongoing nature of symptoms affecting daily functioning and quality of life.

Read the full report here

This survey was made possible with thanks to Roche, Merck Healthcare and Alexion Pharmaceuticals, Inc.