We are delighted to share the news that the National Institute for Health and Care Excellence (NICE) has approved Givinostat (Duvyzat) for use within the NHS in England, a decision that is usually followed by Northern Ireland and Wales. This final draft guidance, issued 8th May 2026, marks a significant milestone for the Duchenne muscular dystrophy (DMD) community and follows the December 2025 approval across Scotland, meaning greater equity across the UK.
For every family living with Duchenne, access to treatments that offer the potential slow disease progression matters enormously, and Action Duchenne welcomes this decision. This positive step forward would not have been possible without support from the whole community. Patient organisations including Action Duchenne, Duchenne UK and Muscular Dystrophy UK collaborated tirelessly throughout the NICE appraisal process ensure the community’s voice was represented. Patient and carer experts contributed testimonies that played a meaningful role in helping the committee understand the profound impact of Duchenne on individuals and families, and the importance of delaying disease progression at every stage.
NICE Guidance and Eligibility
The NICE has approved Givinostat for ambulant patients aged 6 years and over. It is important for families to understand exactly what this means for eligibility.
According to the guidance, Givinostat is approved for patients who meet the following criteria:
- Age: Patients must be 6 years old or older.
- Ambulatory Status: Patients must be able to walk or stand, with or without support, at the time they first start treatment.
Important note on continued use: NICE has confirmed that while a patient must be ambulatory to begin Givinostat, they are permitted to continue taking it if ambulation is later lost. Patients already receiving Givinostat treatment via early access programmes (EAP) before this guidance was published will continue to have access. We recognise this news may bring up difficult questions for the non-ambulatory patients and families. We would like to emphasise that Action Duchenne continues to engage with all relevant stakeholders to focus on this area and are working in collaboration with all parties
NHS Access and Next Steps
The NICE’s new approval now extends access to families in England, with Wales and Northern Ireland likely to adopt the recommendation in due course.
This approval means that Givinostat must now be made available for prescribing on the NHS in England within 90 days of the guidance being published. This means that patients should be able to access this treatment in August of 2026.
We understand that navigating treatment options can be complex. If you wish to discuss eligibility for your child or yourself, your next step will be to contact your neuromuscular clinician at your NorthStar Centre to explore whether Givinostat is the right treatment.
“This news is a welcome next step for families living with Duchenne across England, and we recognise the impact it can have on eligible families. We were proud to represent the Duchenne community as a critical friend throughout the approval process.” Katie Endacott, CEO
A Note From Our Team
We know that Duchenne is a relentless condition, and the search for effective treatments is a journey we travel together. We know this approval will not include everyone in our community, and we recognise how difficult that can be to hear. While we celebrate this approval and what it means for eligible families, we remain acutely aware of those in our community who may not yet meet these criteria. News of this kind can be difficult, and we want you to know we are here. If you need to talk or would like support, please reach out to us at support@actionduchenne.org or call us on 07535 498506.
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