Report on May’s Myology Café

May’s Myology Café was the Myology Developments Across the World Committee’s first session in a new series of talks. This series focuses on exploring regional approaches to neuromuscular disorder (NMD) care and patient registries. It aims 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.

In May’s session, which took place on Thursday 15^th May, Dr Rasha El Sherif invited Karolína Podolská, Czech internal physician focusing on adults with Duchenne, to present about the importance of reaching a universal standard of care for patients with DMD, across various states and regions.

Dr. Podolská shared her experience as Accredited Duchenne Centers Program Manager, emphasising how every centre faces different challenges, from having to coordinate multidisciplinary care across several hospitals, to trying to arrange cardiac MRI or better staffing for their team. She explained how discussions and sharing of best practice and experience during visitation in a centre can lead to practical plans to change things for better. She also shared how inspiring it is to see how centres in different countries cope with challenges they have to overcome.

After the presentation, attendees participated in a group discussion about how care often gets less attention than research in the Duchenne field and that clinicians should, in their recommendations, prioritise a little bit more daily care and mental health of the whole family.