Response to letter: A decision for life - Treatment decisions in newly diagnosed families with spinal muscular atrophy
2021
Abstract
We highly appreciate the comment by Gusset et al. on our ad-hoc consensus statement, as input from patient organisations is instrumental to ensure that patients and their families remain in the focus of the debate. We fully support the demand of the authors for data-driven education, transparent communication to families and patients, and a balanced public discussion in the context of new available treatments for spinal muscular atrophy (SMA).