Only 37% of orphan medicines are reimbursed in Ireland. Rare Diseases Ireland calling for faster access.
Rare Diseases Ireland has highlighted a critical issue: 163 orphan medicines now have EU approval, but people living with rare diseases in Ireland face long delays getting access. They're urging the Minister for Health to establish an Early Access Scheme so patients can get life-changing treatments within one year of approval, not years down the line.
Calling All SMA Researchers: International researchers are invited to explore two exciting funding opportunities.
International researchers are invited to explore two exciting funding opportunities currently available from SMA Europe and Cure SMA. Both organisations have active grant calls supporting research that aims to advance our understanding of spinal muscular atrophy (SMA) and improve outcomes for people living with the condition.
Walk4Ollie Returns on 26 September 2026!
Walk4Ollie is back! On Saturday, 26 September, Paddy Hickey will tackle the seven-leg journey from North Wall, Dublin to Enfield, Co. Meath, raising vital funds for Muscular Dystrophy Ireland and the Ollie Hickey Fund. The route takes in Cross Runs Bridge, Castleknock, Leixlip Confey, Maynooth, Kilcock, and Fern's Lock, with supporters invited to join for any leg that suits them.
Have your say! - How does Climate Change impact you?
Global Action Plan (GAP) have reached out to MDI and asked us to share their survey on disability and climate change. ChangeABLE is an Erasmus+ project that GAP is delivering with partners in Ireland, Italy and Germany, and it originated out of shared concerns that people with disabilities aren’t being meaningfully included in climate action planning. They want to hear your feelings about climate change. How climate change affects you and what has changed in your daily life.
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[Press Release] RTÉ Toy Show Grant Brings Barretstown Family Camp Back for 2027.
Muscular Dystrophy Ireland is one of over 170 organisations benefitting from the latest round of RTÉ Toy Show Grants which been made possible by the generosity of the annual television spectacle.
We made progress for boys with DMD. Now it’s time to support people with FA!
We are advocating for urgent access to Skyclarys. For individuals and families affected across Ireland, timely access to this treatment is of utmost importance. Families understand that processes must be followed, but what we are asking for now is urgency, transparency and clear timelines. Delays in reimbursement decisions can allow the condition to worsen permanently, leading to long-term effects on health and wellbeing. Whatever the outcome of this meeting, there must be no unnecessary delays.
Assistive Technology News Monthly: July 2026
The July edition of MDI's Assistive Technology Monthly Update is here. This month we invite members to join our new AT Peer Support Group and register interest in our upcoming AT webinar series, led by MDI staff and experts in the field. You will also find presentations from AHEAD's three-day Gather event on assistive technology in further and higher education, plus an inspiring Irish Times feature on how AT supported one man's recovery after spinal cord injury. Our Product Spotlight features an electric adjustable bed recommended by a member, and the resources section rounds up adaptive clothing and footwear suppliers for adults and children.
Johnny Matthews Golf Classic Raises Support for MDI and Three Fellow Charities
The 6th Annual Johnny Matthews Golf Classic took place at Tramore Golf Club, Waterford on the 10th and 11th of July, raising funds and support for four charities: Muscular Dystrophy Ireland, Cystic Fibrosis Waterford, Autism Friendly Waterford and The Waterford Foodbank.
July 12th is Disability Awareness Day
Disability Awareness Day, celebrated on July 12th, is one of the largest events of its kind in the UK, held annually in Warrington and recognised nationwide. This day aims to raise awareness of the various challenges faced by disabled people and promotes inclusivity, accessibility, and equality. The event features a wide range of activities, including information stalls, demonstrations of accessible technologies, and discussions on disability rights. Disability Awareness Day seeks to break down barriers, celebrate the achievements of disabled people, and highlight the importance of creating accessible environments for all.
MDI Awarded RTÉ Toy Show Grant to Support Barretstown Family Camp 2027
Muscular Dystrophy Ireland is delighted to be one of over 170 organisations benefitting from the latest round of RTÉ Toy Show Grants, made possible by the generosity of the annual television spectacle. Community Foundation Ireland announced grants this week, working to turn viewers' donations into on-the-ground actions that benefit children and their families.
MDI supports Disability Federation of Ireland’s Pre-Budget 2027 Submission
Budget 2027 is a test of Government’s promise to disabled people. It’s time to make sure they deliver. As one of its member organisations, MDI supports Disability Federation of Ireland (DFI) Pre-Budget Submission 2027, “The least we can expect”. The National Human Rights Strategy for Disabled People is now published, and Budget 2027 is the first real test of whether Government will deliver across every Department
MDI National Conference – Shared Voices, Shared Strength, 21 November 2026
We’re busy behind the scenes preparing Muscular Dystrophy Ireland’s Shared Voices, Shared Strength Conference on Saturday 21 November at Croke Park. With a fantastic lineup of speakers and plenty of engaging discussions in store, it promises to be an informative and impactful event. Save the date!
Have you lived with a neuromuscular condition and accessed healthcare services in Ireland?
A Master's student from the School of Psychology at the University of Galway is conducting a study exploring experiences of sexual healthcare among people living with neuromuscular conditions in Ireland.
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[Special Report] MDI Barretstown Family Camp 2026: A Weekend to Remember
MDI were delighted to team up with Barretstown for our third annual Family Summer Camp. From the 15th to the 17th of May, we welcomed 30 families, totalling 140 campers, for a weekend full of laughter and connection.
MDI Counselling Service: Updated and Ready to Support You
MDI offers short-term counselling for individuals and family members, with a panel of accredited, Garda vetted counsellors and therapists supporting children, adolescents, and adults. The service includes talk-based counselling and psychotherapy, play therapy for younger members, and creative arts therapies for those who find it difficult to put thoughts and feelings into words. Sessions are generally delivered online or by phone, so support is accessible no matter where you live.
The European Commission has granted marketing authorisation for SMA treatment Itvisma
The European Commission has granted marketing authorisation for Itvisma (intrathecal formulation of onasemnogene abeparvovec, developed by Novartis) for the treatment of adults and children aged 2 years and older living with 5q spinal muscular atrophy (SMA). The European Commission’s decision follows the positive opinion adopted by the Committee for Medicinal Products for Human Use (CHMP) in April 2026.
July is Disability Pride Month
Every July, the world comes together to celebrate Disability Pride Month, a time to honour the lives, experiences, and identities of disabled people. While it may not be as widely known as other awareness months, Disability Pride Month has been growing in significance since it began with the first Disability Pride Parade in the UK and Ireland held in Belfast in 2014.
MDI Supports Neurological Alliance of Ireland Pre-Budget 2027 Submission
MDI is proud to support the Neurological Alliance of Ireland’s (NAI) Pre-Budget 2027 Submission, which was launched on 24 June.
Noeleen Gannon, Club Secretary of M&F United Powerchair Football Club, shares the impact of MDI’s support.
We are incredibly grateful to have received two Strike Force Power Soccer chairs for our club through funding provided in conjunction with MDI and The Lords Taverner’s. This generous support means so much to our club and to all of our players.
David Kennedy describes the impact of early support from MDI’s Clinic Liaison service following his diagnosis.
I still remember very clearly the day I was first diagnosed with FSH muscular dystrophy by the neurologist in Beaumont Hospital. As I left the consultation, I genuinely felt that I was on my own and unsure how to navigate what lay ahead. Just as I was about to leave the hospital, Dr. Lefter called me back to introduce me to Sinead as the Clinic Liaison Officer with Muscular Dystrophy Ireland. After spending time with her that morning, I left Beaumont in a completely different frame of mind – reassured, supported, and confident that I was not alone.