Duchenne Map

Fragmentation, duplication of efforts and lack of reliable information are barriers to every rare disease community. Although these factors directly affect the quality of life and care of people living with dystrophinopathies and their families, they also impact access to care, treatment, recruitment to clinical trials, and participation in research projects.

Duchenne map serves as an online platform centralizing a wide variety of  information merged from different sources. It provides updates on clinical trials, new medicinal products, care centers, support services, and research projects.

Connecting the local and global dystrophinopathy community

Duchenne Map is acting as a hub to connect the key stakeholders in the dystrophinopathy community Duchenne Map connects patients with their local patient organizations, healthcare providers, care centers, researchers, research institutions and pharmaceutical companies at the local and global levels. To this end, all stakeholders are encouraged to participate in the dystrophinopathy community and engage with the platform. By doing so, the platform collects data that can be analyzed to improve the lives of people living with dystrophinopathies and their families. In addition, Duchenne map collects and stores data in a safe and secure way with user consent at the heart of how we use the data.

A safe and inclusive data platform

Duchenne Map offers a secure and inclusive platform where key stakeholders, share reliable information. At the same time, it is aiming to act as an incubator for networking and collaborative projects to promote research and healthcare. The initiative is supported by the PTC Therapeutics Strive Awards program and is developed by Duchenne Data Foundation. It receives support from the World Duchenne Organization.

For more information or inquiries, please contact the project managers in charge of the Duchenne Map:

Elvina Sakellariou: [email protected]

Sergiu Siminiuc: [email protected]