The nonprofit group CureDuchenne and Connecticut-based rareLife Solutions have launched DuchenneXchange — a dedicated online platform where those interested in Duchenne muscular dystrophy “can share comprehensive, safe, credible resources and information, as well as get the support they need from diagnosis to treatment to clinical trials.”
The project, announced in a press release, is being underwritten by three pharmaceutical companies that are pursuing therapies that might treat this genetic neuromuscular disorder: Sarepta Therapeutics, Pfizer and PTC Therapeutics.
“Navigating care and clinical trials can be extremely overwhelming for individuals and families living with Duchenne muscular dystrophy,” said Debra Miller, founder and CEO of CureDuchenne. “That’s why it’s crucial to connect families with each other and the medical and research communities early and throughout their journey, so they can get the emotional and medical support they need.”
CureDuchenne and rareLife Solutions will co-host an Aug. 7 webinar to explain the platform’s benefits to those interested in learning more. To register for the webinar, please click here.
“DuchenneXchange offers a unique opportunity to truly transform the care of patients and caregivers living with Duchenne today and in the future,” said Dan Donovan, co-founder and CEO of rareLife Solutions. “Unlike other social media channels, members of the DuchenneXchange will never see advertising. Instead, this platform serves up trustworthy Duchenne knowledge in a variety of formats to help members along their journey.”
In the rareCourage “smart” social wall, for example, as keywords pop up in conversations, a variety of videos, news articles, research papers, community activities and clinical trials are embedded directly into those conversations — exactly at the point when people are talking about it, and receptive to learning more.
Other highlights of the DuchenneXchange user interface include:
- rareCurate: a hand-selected, disease-specific resource library including Evidence & Education, People & Places, Social & Media, Videos & Visuals, and News & Meetings.
- rareClinical: a clinical education center that also matches patients to trials, and trials to patients.
- rareTeams: private teams to share private conversations.
- myBinder: a personal folder of saved information to share with doctors, friends and family.
- Polls & Surveys: for immediate real-world patient/caregiver experiential data to better understand the Duchenne journey.
CureDuchenne, based in Newport Beach, California, says it has leveraged more than $1.3 billion in investment from venture capital, and biotech and pharmaceutical companies to fund research. Other patient advocacy groups involved in DuchenneXchange include Canada’s Fondation La Force; Devin Strong of Manitowoc, Wisconsin; Braedan’s Bridge of Curtice, Ohio; Rally for Ryan of Naperville, Illinois; and The Akari Foundation of San Antonio, Texas.
“Since diagnosis, I struggled to find comprehensive, accurate information that is Duchenne-specific,” said Tammy Henegar, founder of Braeden’s Bridge. “There is also a lot of confusing information floating around out there about Duchenne. The DuchenneXchange seeks to solve that problem, and we are excited about this incredible opportunity to engage our amazing Duchenne community and guide them in a positive way.”
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