“The greatness of a community is most accurately measured by the compassionate actions of its members.”
– Coretta Scott King
Just over a year ago, the entire Duchenne community was invited to participate in a neutral, friendly and safe community platform known as the DuchenneXchange. Since then, more than 90,000 pages have been viewed by visitors to the platform.
Our mission, to offer high-quality resources and support to better the health of people affected by Duchenne, is a collaborative effort supported by 15 Duchenne advocacy groups, four sponsors, and three world-renowned Duchenne muscular dystrophy experts.
Our 1,400 registered members include more than 850 parents and 100 patients. And with 135 countries represented, we truly are a global Duchenne community.
The posts in rareCourage have been amazing! Members have shared many inspiring stories about living life beyond the restrictions Duchenne attempts to impose upon us. There have also been a lot of questions about medications and research. Parents of newly diagnosed children have turned to the DuchenneXchange to get answers to their questions and obtain support in their time of need.
I feel fortunate to have been able to help whenever possible, but far more encouraging for me has been witnessing the way fellow community members have supported each other and shared their personal experience.
We launched the DuchenneXchange Blog on June 1st so that we could offer more personalized content to address the unique needs of our community. The feedback we’ve received has been incredible! I believe the reason it has done so well is because the posts are written by members of our community. Their ability to share an aspect of life impacted by Duchenne based upon their experience is something few people can do. If you’re interested in contributing to the blog, please check out the DuchenneXchange Blog Guidelines page.
We’ve come a long way over the past year, but I assure you, it’s only the beginning. We’ll continue to utilize feedback from our members to add new features and content. Please let us know if there’s anything you’d like to see added to the platform. After all, the DuchenneXchange has been, “Built by the Community, For the Community.” That is exactly why you can always count on the DuchenneXchange for the resources you need along with the understanding and support you deserve – anytime you need us, no matter where you are.