Action Duchenne have monthly online meet-ups for Duchenne dads, mums and grandparents, facilitated by our Family Support Officers and designed to enable connection with those who truly understand. A Duchenne diagnosis can often set people apart from the support systems they usually rely on. Our support groups mean you can meet people who know exactly where you are and how you feel. You’re safe in the knowledge that you’ll always be understood.
“When I first joined Action Duchenne’s DADs group, it was just after my son’s diagnosis, a time when everything felt raw, uncertain, and frankly overwhelming. What I found was a circle of dads, guided by the ever-steady Alex, who truly understood what I was going through. They didn’t need me to explain the weight I was carrying as they’d carried it themselves. It was a space of honesty, understanding, and guidance from people who’d been in my shoes.
Over time, those calls have become an invaluable, grounding part of my personal journey. They’ve helped me make sense of things, reminded me that strength doesn’t mean doing it alone and shown me how shared pain can become shared purpose. I’ve also been able to give something back, being there for newly diagnosed dads, offering the same support I once needed, all the while continuing to learn and share from others as my son’s condition progresses. The group’s given me real connections; it’s a safe space offload that partners or friends understandably can’t always provide, and practical ones too: real-world advice, things to plan for, ways to cope. Honestly, it would’ve been a much harder road without having joined this group.” Attendee of Dad’s against Duchenne Group
Register to attend our support groups here:
Givinostat Accepted for Restricted Use Within NHS Scotland for the Treatment of Duchenne in Patients 6 Years and Older
