International congress to facilitate families and those affected to provide information and share experiences to promote support and learn about the different aspects of Duchenne and Becker Muscular Dystrophy.
For the first time, the World Duchenne Organization will team up with RaDiOrg Rare Diseases in Belgium and SMA Europe in Germany to form a wider network of approximately 160 Patient Organizations all interested in how the FAIR principles could make a difference in optimizing the use of patients’ data.
Duchenne Patient Academy is a collaboration between the World Duchenne Organization and Duchenne Data Foundation. It aims to inspire and equip patient advocates to become change makers and build a better future for people living with dystrophinopathies. So far, it has trained over 500 DMD/BMD patient advocates from 52 countries. ONLINE Applications for Duchenne Patient Academy open mid-September.