Support the campaign for timely assessment of Givinostat for Duchenne muscular dystrophy

Urgency Matters: Time is Muscle

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Muscular Dystrophy Ireland will send you periodic updates and action alerts by email. We will do our best to respect your time and interest. You can remove yourself from the mailing list at any time by using the link at the bottom of emails we send you. We will not give your email address to anybody else.

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Dear (each TD / Senator will get a separate, personalised email),

I am writing to you as your constituent to ask you to proactively support the campaign on timely access to Givinostat (brand name Duvyzat) for Duchenne muscular dystrophy.

Givinostat received EU conditional marketing authorisation on 6 June 2025. While this is a critical milestone, each EU member state must now conduct its own health technology assessment (HTA) and make a reimbursement decision. Italfarmaco, the developer of Givinostat, must first submit its Rapid Review Application, which initiates the HSE’s reimbursement process.

Recent data from the Irish Pharmaceutical Healthcare Association (IPHA) show that orphan medicines, used to treat rare conditions such as DMD, took an average of 655 days to be reimbursed between 2022 and 2024 (IPHA, 2025), significantly longer than many other European countries (EFPIA, 2025). Time is crucial for children with Duchenne, as the window for effective intervention is narrow. It is therefore critical health authorities act promptly once Italfarmaco submit their application.

I am asking you to demonstrate your commitment to supporting families of boys with DMD by:

- Attending a briefing on the campaign at the Audio-Visual Room, Leinster House at 2.30pm on Wednesday 11 June. Your attendance and support would be greatly appreciated.

- Leveraging your role as our 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.

- Calling on the Government to uphold its commitment, as outlined in the Programme for Government, to ensure that patients have timely access to new and innovative treatments.

I hope you will be able to attend the event and support our young people with DMD and their families to access timely treatments.

I look forward to hearing from you.

Yours sincerely
etc,

Support the campaign for timely assessment of Givinostat for Duchenne muscular dystrophy

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