Patient organisation Cure HSPB8 adopts new name: Cure MFM13 8 December 2025

https://rarerevolutionmagazine.com/patient-organisation-cure-hspb8-adopts-new-name-cure-mfm13/ The condition at the centre of our work has long been referred to by several different names, including HSPB8 myopathy and distal myopathy with rimmed vacuoles. This variety of terminology has often made it challenging for patients, families, and researchers to access clear and reliable information.