Action Duchenne

Action Duchenne is a patient advocacy group dedicated to supporting individuals and families affected by Duchenne muscular dystrophy (DMD) and Becker muscular dystrophy. The organization provides comprehensive support services, educational resources, and advocacy initiatives. Key activities include running a DMD Registry, offering family support programs (e.g., for mums, dads, grandparents, siblings, and age-specific groups for children and young adults), providing counselling, and addressing end-of-life and bereavement needs. They host an Annual International Conference to empower the Duchenne community through education, foster inclusivity, and drive comprehensive support, bringing together patients, families, clinicians, healthcare professionals, and industry representatives. Action Duchenne also disseminates news on Duchenne research and clinical developments, engages in policy advocacy, and offers educational content on Duchenne science and care.