Action Duchenne comment on statement from NorthStar Network UK about Givinostat
Firstly, and most importantly, our thoughts are with the families of the three boys who have sadly passed away. We know their loss is felt by each and every family across the Duchenne community.
Following the NorthStar Network UK’s statement we are aware of three deaths occurring in patients with Duchenne muscular dystrophy who were being treated with givinostat (Duvyzat).
We have intentionally held off making any comment until we felt our team were as informed as they could be, and able to support you.
This statement and news is understandably concerning to families across the UK and Ireland whose children are currently being treated with givinostat, and we know you are likely to be feeling nervous.
Along with other leading Duchenne charities, we reached out to the NorthStar Network for further information and a formal statement. They have now shared this with us, and we are passing it on to you, with our comments.
Supporting families living with Duchenne is at the heart of what we do. We will share everything with you to help you make the most informed decision for your child or yourself. However, ultimately your Clinician is the best person to advise you on this specific treatment. We are here to listen, to support, and we are alongside you. We will of course update you if there is any further news, and please call to have your voice heard and to be supported in this challenging time.
As a reminder, our team can be reached on 07535 498506.
