DuchenneXchange.org Online Platform for Duchenne Community Reaches Milestones with Partner Organizations and Users
NEWPORT BEACH, Calif.--(BUSINESS WIRE)--Sep 7, 2018--The DuchenneXchange.org has a reason to celebrate on World Duchenne Day. The dedicated online platform for the Duchenne muscular dystrophy (DMD) community announced today it has surpassed enrollment goals of partner organizations and users since it was introduced to the community just five weeks ago. To date, 13 Duchenne-related nonprofit organizations and 700 community users have joined, numbers that the DuchenneXchange.org set for the three-month mark.
“We are absolutely thrilled that the Duchenne community has embraced the DuchenneXchange. It demonstrates how united the community is and its need for vetted, trustworthy information in a safe online space,” said Debra Miller, founder and CEO of CureDuchenne, the nonprofit that spearheaded the project with developer rareLife solutions.
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. Duchenne stakeholders, including patients, families, organizations, scientists, advocates, health care professionals, and pharmaceutical companies have been invited to participate.
To date, 13 advocacy organizations, including Fritz and Friends, Rally For Ryan, Light It Up Green for MD, Fight DMD, Ride Out Duchenne, Akari Foundation, Red Balloons, Braedan’s Bridge, La Force, Devin Strong, Little Hercules Foundation, JB’s Keys and CureDuchenne have joined the DuchenneXchange. As a participating organization, nonprofits have the ability to share content such as videos, events, articles or other news, promote their merchandise, and contribute to polls to help gain insightful knowledge about the Duchenne community.
CureDuchenne is the leading nonprofit dedicated to extending and improving the lives of 300,000 boys worldwide who have Duchenne muscular dystrophy, a degenerative disease with no known cure. CureDuchenne uses an entrepreneurial venture philanthropy model to fund impactful research and accelerate human clinical trials. Through its CureDuchenne Cares program, CureDuchenne provides confidence to families seeking valuable resources, trains physical therapists and other health professionals on new standards of care and provides hope, support and empowerment to the Duchenne community. For more information, please visit www.cureduchenne.org, and follow us on Facebook,Twitter and YouTube.
View source version on businesswire.com:https://www.businesswire.com/news/home/20180907005239/en/
Joanne Forster, 310.498.7585
KEYWORD: UNITED STATES NORTH AMERICA CALIFORNIA
INDUSTRY KEYWORD: TECHNOLOGY INTERNET HEALTH INFECTIOUS DISEASES OTHER HEALTH PHILANTHROPY RESEARCH SCIENCE FOUNDATION
Copyright Business Wire 2018.
PUB: 09/07/2018 10:00 AM/DISC: 09/07/2018 10:00 AM