MISSION & VISION

BRING DATA TO LIFE TO IMPROVE THE DMD WORLD AND CREATE KNOWLEDGE WE CAN ACT UPON

Data

We aim at providing a unified environment for patient data from various sources across the world, adopting all necessary security and legal standards, as well as the data principles to make data FAIR. This enables us to develop best practices on health data management processes and data harmonisation.

CONNECTION

We’re developing tools for better use of new and existing data to support effective, affordable and safe treatment of individuals with DMD and BMD. We facilitate optimal and safe exchange, collection and connection of data and knowledge.

EDUCATION

We focus on creating a unified global strategy and provide systematic and structured training to all healthcare stakeholders. Our goal is to empower patient-led research and create an evidence-based decision-making culture in collaboration with regulators, policy-makers and healthcare stakeholders.

ACCESS

We work on technologies that enable patients to have full control over their care data and individual clinical trial data. We focus on promoting access, use and re-use of data to fuel research and drug development that matters to patients.