Five months ago I found this forum and hoped that it would be a source of information about Duchenne. Unfortunately I found that participation in this once active forum has significantly decreased. Fortunately a member tipped me off that everyone had moved to Facebook group. I received an email notification of an response to an old post today and thought it would be good to post links to some of the active Facebook groups;
Duchenne Under 10 - ~1,500 members. An active group discussing aspects of Duchenne for primarily ambulant patients
Actual/Potential Drugs/Supplements used for people with Duchenne - ~1,500 members. An active group discussing treatments in use and in development.
PPMD - ~ 700 members. A group for discussion of PPMD activities. https://www.facebook.com/groups/193312207492703
The D.M.D ARMY - ~3,100 members. An active group discussing all aspects of Duchenne.
There are many more but this list will help you get started.