NCPE Completes Givinostat Review: What It Means for Duchenne Families
In November, MDI, in collaboration with Duchenne families, launched a survey to capture the lived experience of families living with Duchenne muscular dystrophy to support the patient submission for the reimbursement of givinostat. We would like to say a heartfelt thank you to everyone who took the time to participate.
Share Your Experience: Help Inform Access to Givinostat for Duchenne Muscular Dystrophy in Ireland
A review is under way to decide if Givinostat for Duchenne muscular dystrophy will be reimbursed in Ireland. Your experience of living with Duchenne can help inform this decision - share your story in the survey link.
‘Time Is Muscle’: MDI Supports Families in Campaign for Rapid Review of Duchenne Treatment Givinostat
Please join us in asking your local TDs and senators to keep this matter on the political agenda by attending a briefing on the campaign at the Audio-Visual Room, Leinster House at 2.30pm on Wednesday 11 June. and leveraging your role as you elected representative to highlight the importance of timely and planned action. Time is muscle and delays in reimbursement risk excluding eligible children simply because the disease progresses while they wait.
Update on Duvyzat™ (givinostat) for Duchenne Muscular Dystrophy
Duvyzat™ receives positive recommendation from the EMA’s CHMP for conditional approval in DMD.
Click to read what this could mean for families and what happens next.