The July Myology Café took place on Thursday 17th July 2025, and was the second in a new series of sessions designed to explore regional approaches to neuromuscular disorder (NMD) care and patient registries. These sessions aim to foster cross-regional collaboration, promote the sharing of practical insights, and support continuous learning among healthcare professionals working in the field of rare NMDs.

Our guest speaker for July was June Kinoshita, Senior Director of Research and Education at the FSHD Society. June gave an overview of the society and described its 34-year history as a patient-driven organisation that today is providing education, support and community for patients and families worldwide; leading and funding research initiatives in both basic discovery and therapy development; and paving the way for patient access to better treatments and improved quality of life globally through the World FSHD Alliance and Project Mercury. She described some highlights from the Society’s 2025 International Research Congress, including topline results from Avidity Bioscience’s Phase 2 clinical trial of del-brax.

You can find dates of all future Myology Cafés and summaries of previous sessions on our website.