The DuchenneXchange online social platform has launched a mobile and desktop app for the Duchenne muscular dystrophy (DMD) community, to encourage discussion and to share news, diagnosis and treatment resources, and clinical trial information.
The goal for the new app is to make the DuchenneXchange a better place “to learn, listen, connect and explore,” organizers said in a press release.
Started by the nonprofit CureDuchenne and the Connecticut-based rareLife Solutions in 2018, DuchenneXchange is a collaborative platform built by the DMD community. It serves as a safe virtual environment to connect with and support individuals and families affected by DMD.
“When a family is trying to understand a rare disease and ensure they are doing everything to provide the best treatment for their child, social networks can be a minefield of misinformation and even cyber bullying,” said Josh Argall, senior manager of DuchenneXchange.
“The DuchenneXchange provides a safe environment of sympathetic and knowledgeable participants moderated by clinicians and experts on the rare disease,” he added.
While its previous iteration was only accessible online at DuchenneXchange.org, the revamped DuchenneXchange now is also available as an app that can be downloaded from the App Store or Google Play Store.
The platform is open to the entire DMD community, including patients, families, support organizations, and advocates, as well as researchers, health care providers, and pharmaceutical company representatives.
Sponsored by CureDuchenne, the updates to DuchenneXchange’s infrastructure will allow users to connect with other members of the community in a secure environment. According to the nonprofit, changes in mainstream social media networks made the DMD community need a dedicated digital space to convene.
“We noticed a tremendous need for a platform that can be private to our community,” said Debra Miller, founder and CEO of CureDuchenne.
“As the infrastructure sponsor, our support of the DuchenneXchange builds on this and provides a place where the community can come together without fear of politicized, misinformed or incorrect comments,” Miller said.
Among the platform’s updated features are increased opportunities for social networking and the ability to find members of the DMD community with shared interests and in nearby geographic locations. The user blogs also have been updated and the platform now features improved tools to hear from users, and real-time DMD news with information about clinical trials and research.
DuchenneXchange also features a searchable and regularly updated clinical trial finder, to help people find applicable studies, and resource directories to assist users in finding nearby healthcare providers.
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