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More than 60 organizations unite to strengthen awareness, registries, research, and access to care for people living with myotonic dystrophy (DM).15 September 2026, Worldwide: The Global Alliance for Myotonic Dystrophy Awareness (Global Alliance) proudly celebrates the sixth annual International Myotonic Dystrophy Awareness Day. More than 60 organizations from around the world are uniting to raise awareness, advance research, and improve care and quality of life for people living with myotonic dystrophy (DM) and their families.

Evrysdi for adults with SMA in Ireland: what to do next

MDI welcomes the significant development that reimbursement for Evrysdi (risdiplam) will be extended to a defined group of adults living with spinal muscular atrophy from 1 October 2026.

As part of Muscular Dystrophy Awareness Month, we’re delighted to highlight MDI’s successful partnership through Research Ireland’s Enterprise Partnership Postgraduate Scheme, mentoring an early-career researcher at Royal College of Surgeons Ireland (RCSI) University. This exciting partnership is helping to advance research into Duchenne muscular dystrophy (DMD) while supporting the next generation of researchers in the field. 

The National Rare Disease Office (NRDO) is pleased to launch an Expression of Interest (EOI) process seeking Patient Partners to participate in implementation of the National Rare Disease Strategy 2025-2030. Patient Partners will contribute to National Rare Disease Strategy Workstream Groups and the Patient Partnership Forum, working alongside patient advocacy organisations, clinicians, researchers, healthcare professionals, policymakers, and other stakeholders to help shape and inform implementation of the Strategy.

With the Disability Act 2005 under review for the first time in over 20 years, and growing concern about poverty among people with disabilities, Muscular Dystrophy Ireland recently surveyed members to hear about their experiences first-hand. Thirty-five members and family members took part, representing a range of ages, conditions and living situations across the country. The findings paint a clear picture: two decades on from the Act, significant barriers remain in housing, public spaces and daily living costs.

Team MDI have been embracing the Bad Shirt Friday spirit today ahead of tonight's fundraising gig at First Presbyterian Church, Rosemary Street, Belfast. Even our CEO Alan and Comms Officer Niall got in on the act!

IRELAND'S premier garage-punk-blues duo The Bonnevilles will be lending their support to a very good cause this evening when they join the bill of a special charity show at First Presbyterian Church in Belfast.

September is Muscular Dystrophy Awareness Month, and we wanted to take this opportunity to remind members and families about the range of free wellbeing services available through MDI.