The volatility of the past year has created additional strain on families grappling with Duchenne muscular dystrophy, a severe X-linked form of muscular dystrophy that affects approximately 1 in 3,500 to 5,000 males born each year.
- Volatility of Mainstream Social Media Networks Exacerbated Need for an Online Community Capable of Ensuring Scientifically Accurate and Emotionally Supportive Content and Interaction
- DuchenneXchange is a Collaborative Digital Platform and Mobile App Built By the Duchenne Community, for the Duchenne Community Offering Trusted Resources to Inform, Inspire and Support Everyone Affected by Duchenne
NEWPORT BEACH, Calif., April 6, 2021 /PRNewswire/ -- The volatility of the past year has created additional strain on families grappling with Duchenne muscular dystrophy, a severe X-linked form of muscular dystrophy that affects approximately 1 in 3,500 to 5,000 males born each year. Misinformation, cyber bullying and unwanted data collection on other social platforms added to the reasons for enhancing DuchenneXchange.org.
The DuchenneXchange is a dedicated platform for the Duchenne community to learn, listen, connect and explore. All Duchenne stakeholders, including patients, families, organizations, scientists, advocates, health care professionals, and pharmaceutical companies, are invited to participate. In this collaborative, inclusive environment, the entire Duchenne community can share credible resources and information as well as get the support they need from diagnosis to clinical trials and treatment. With an improved infrastructure and functionality sponsored by CureDuchenne, a leading national nonprofit, the DuchenneXchange is now poised to better achieve its community goals of service and collaborative engagement.
“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.”
A significant aspect of the new DuchenneXchange is that it’s built for both desktop browsing and a mobile app that can be downloaded in the iOS App Store or Google Play. Now, users can access and engage with a wide range of people, content, events, and updates from across the rare disease community on any device, at any time. This enables members to take full advantage of the improvements to the DuchenneXchange, including:
- Members can connect with each other in a secure and trusted environment, without the fear of bullying, irrelevant ads or other privacy concerns.
- Groups now feature more opportunities for social networking within the site and engagement with each other, plus new maps and profile search tools enable the Duchenne community to engage with nearby members who share similar interests.
- Users can write a blog, be noted as the author and share their thoughts throughout the Duchenne community, offering a wider range of perspectives and experiences.
- Updated survey and poll capabilities empower members to take a more active role sharing their insights and thoughts with the community.
- Real-time news keeps users informed on relevant Duchenne information, clinical trials and study progress.
- A clinical trial finder that’s searchable and updated daily helps the community stay abreast of next-generation therapies in development and find available clinical trials to participate in.
- The resource directories feature both clinics and clinicians so the community can easily find nearby providers and convenient locations.
“We noticed a tremendous need for a platform that can be private to our community,” said Debra Miller, founder and CEO of CureDuchenne. “The needs of the community are always first and foremost in our programs. 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. The DuchenneXchange is truly a place for the Duchenne community to come together.”
The community is invited to learn about the benefits and features of the DuchenneXchange by visiting DuchenneXchange.org or downloading the DuchenneXchange app from the Apple App Store or Google Play Store.
About DuchenneXchange
Built by the Duchenne community for the Duchenne community, the DuchenneXchange is a collaborative, inclusive environment where the entire Duchenne community can share comprehensive, safe, credible resources and information as well as get the support they need from diagnosis to treatment to clinical trials. The entire Duchenne community is invited to join, including patients, families, organizations, scientists, advocates, health care professionals, and pharmaceutical companies.
View original content to download multimedia:http://www.prnewswire.com/news-releases/duchennexchange-launches-v2-0-as-rare-disease-community-seeks-safe-place-to-discuss-treatment-research-covid-19-immunization-and-other-critical-topics-301262684.html
SOURCE CureDuchenne
