292th ENMC workshop: Best practices after positive Spinal Muscular Atrophy newborn screening

Description

ENMC has a unique concept of facilitating and organising workshops initiated by experts in the field of neuromuscular conditions. Workshop proposals can be submitted to ENMC twice a year and the ENMC Research Committee judges these workshop applications on scientific quality, timing, relevance and list of participants. The ENMC Executive Committee decides which applications can be developed towards and executed as an ENMC workshop. During a workshop, a selected group of 20 – 25 researchers, clinicians, patients and industry representatives come together in a meeting venue in the Netherlands to exchange state-of-the-art knowledge of, and experiences with a specific rare neuromuscular condition or a special topic relevant for multiple neuromuscular conditions. Output of the workshops are deliverables that, depending on the workshop topic, often focus on:

networking and collaboration in basic and applied research
defining trial readiness and outcome measures
reaching consensus about guidelines for diagnosis, therapy and care
The results of the workshops are published as:

a full report in the journal “Neuromuscular Disorders” to disseminate workshop outcomes to other researchers and clinicians working in the field
a lay report on the ENMC website to inform patients and their families about what has been achieved at the workshop

Period	23 Jan 2026 → 25 Jan 2026
Event type	Workshop
Location	Hoofddorp, Netherlands Show on map