Duchenne Map, Connecting the Duchenne world
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 families, boys and men living with DMD, they also impact access to treatment, recruitment to clinical trials, eventually taking their toll in the DMD medicines development pipeline.
Duchenne Map is an online platform centralizing important information, acting as a hub to connect all those associated with DMD across the world. Beyond its primary use as an information tool, Duchenne Map has the potential to be leveraged for a variety of uses that will add value to the scientific community dealing with this condition.
One place for Duchenne information
Duchenne Map connects patients with their local patient organizations, healthcare providers, care centers, researchers, research institutions and pharmaceutical companies. At the same time, it provides updates on novel clinical trials and breakthroughs on drugs. To this end, all stakeholders are encouraged to participate in the DMD community and engage with the platform. By doing so, the platform collects data that can be analyzed to improve the lives of DMD 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.
Safe and inclusive platform
By doing so, Duchenne Map offers a secure and inclusive platform where all stakeholders, share reliable information. At the same time it is aiming to act as an incubator for ideas and solutions to promote care, access and DMD medicines development. 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, please contact Suzie-Ann Baker, [email protected] or Katerina Tzima, [email protected]