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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.

MDI welcomes the HSE’s decision to approve reimbursement of Skyclarys (omaveloxolone) for eligible adults living with Friedreich ataxia in Ireland. This decision comes after months of campaigning which saw the whole community come together, with people across Ireland getting behind the campaign and supporting people living with Friedreich ataxia and their families.

MDI is delighted to share an important update in our campaign for equal access to treatments for adults living with spinal muscular atrophy (SMA). 

We are pleased to announce the launch of a new physiotherapy referral service for Muscular Dystrophy Ireland members, delivered in partnership with Spectrum Health.