Share Your Experience: Help Inform Access to Givinostat for Duchenne Muscular Dystrophy in Ireland
The National Centre for Pharmacoeconomics (NCPE) and the HSE Drugs Group are currently assessing whether a treatment for Duchenne muscular dystrophy, called givinostat (DUVYZAT®), should be reimbursed in Ireland.
Muscular Dystrophy Ireland (MDI) has been invited to prepare a patient submission as part of the reimbursement process. To support this work, we have partnered closely with Duchenne families through the Time is Muscle campaign to develop surveys that reflect the daily realities of life with Duchenne.
Our goal is to represent the voices and experiences of everyone touched by Duchenne, whether living with the condition, caring for a child, or supporting a loved one. Your voice can help decision-makers understand the real-life impact of Duchenne and the importance of access to treatment.
Every experience, big or small matters. Your contribution will help ensure decision-makers truly understand life with Duchenne and the urgent need for more treatment options in Ireland.
We know sharing your story can be emotional, and we deeply appreciate every person who chooses to take part. Your voice is powerful, and your insights will help ensure the Duchenne community is heard.
Who Can Take Part
We welcome families and individuals at every stage of the Duchenne journey, not only those who may be eligible for givinostat. Your insights will help decision-makers understand the full progression and impact of Duchenne, ensuring that future access decisions, supports, and services reflect the real needs of families over time.
We welcome responses from:
Parents / guardians of a person with Duchenne
Adults living with Duchenne (18+)
Family members, caregivers or friends providing direct or indirect support
Why Your Participation Matters
To inform the HSE’s decision on access to givinostat in Ireland, it’s important they understand:
What daily life with Duchenne is really like
The impact on family life, wellbeing and independence
The emotional, practical, and financial challenges involved
Gaps in current support and treatment options
There are no right or wrong answers, everyone’s experience is unique. Please share as much or as little as you feel comfortable.
Take Part Here
📝 Before starting, please read the Participant Information Form, which explains the purpose of the survey and how your information will be used and protected.
Chose the survey that best fits your experience:
🔗 Parent / Guardian (approx. 50 mins) → Survey link
🔗 Newly Diagnosed Family (approx. 30 mins) → Survey Link
🔗 Extended Support Network (Family, Friend, Carer) (approx. 30 mins) → Survey Link
🔗 Adults Living with Duchenne (18+) (approx. 30 mins) → Survey Link
Each survey is confidential and anonymous.
If you need to take breaks, you can leave your browser open or complete it in sections.
If your experience of Duchenne doesn’t quite fit into one of the groups above but you’d still like to share your perspective, please contact mdiresearch@mdi.ie
🗓️ Deadline: 30 November 2025
More Information and Support
🎥MDI held a Zoom meeting on Wednesday 12 November. You can view the following materials from this meeting:
ℹ️ If you’d like more information on givinostat and the steps involved in the reimbursement process, you can find it here.
📩 If you have any questions about the survey or access to givinostat please contact Dympna Mulroy (MDI Research Officer) mdiresearch@mdi.ie
📩 If you would like to connect with other parents or families affected by Duchenne please email timeismuscle.ireland@gmail.com This will give you contact to a group of parents supporting this submission as part of the Time is Muscle campaign.
Thank you for sharing your story.
Together, we can help ensure the Duchenne community is seen, heard, and supported in getting access to givinostat.