Duchenne Muscular Dystrophy (DMD) Paediatric and Adult Care Pathway Published
The pathway outlines recommendations for the key specialists and services involved in DMD care, supporting coordinated and consistent care for children, young people and adults living with DMD.
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[Press Release] Minister for Health Speaks at Muscular Dystrophy Ireland National Conference at Croke Park
Muscular Dystrophy Ireland (MDI) held its national conference today at Croke Park, with Minister for Health Jennifer MacNeill officially speaking at the event. The conference brought together people living with muscular dystrophy and related neuromuscular conditions, along with their families, clinicians, researchers, and disability advocates from across the country.
Access to Orphan Medicines
MDI provide a written submission to the Joint Committee on Health on issues relating to rare diseases, including access to and reimbursement for medicines.
Check out this helpful video on how to access the CHANGING PLACES TOILET at the Cusack Suite, Croke Park for our conference on 7 December 2025.
Planning to join us at our conference on 7 December? We want to ensure all our attendees have a smooth and accessible experience! Check out this helpful video on how to access the CHANGING PLACES TOILET at the Cusack Suite, Croke Park
Check out this helpful video on how to access the car park and Cusack Suite, Croke Park for our conference on 7 December 2025.
Planning to join us at our conference on 7 December? We want to ensure all our attendees have a smooth and accessible experience! Check out this helpful video on how to access the car park and Cusack Suite, Croke Park:
🎄 Spread Some Festive Cheer with MDI Christmas Cards!
Buying MDI Christmas cards directly supports Muscular Dystrophy Ireland and helps to fund our support services for people with neuromuscular conditions across Ireland and their families..
🚨 Final call! The last day to book your child’s place at Muscular Dystrophy Ireland’s Conference is Friday, 14 November!
Join us at Croke Park on Saturday, 7 December, for a fantastic day filled with connection, fun, and learning. Don’t miss this amazing opportunity for: Youth Programme – ages 8–17 and Children’s Programme – ages 5–7.
Share Your Experience: Help Inform Access to Givinostat for Duchenne Muscular Dystrophy in Ireland
A review is under way to decide if Givinostat for Duchenne muscular dystrophy will be reimbursed in Ireland. Your experience of living with Duchenne can help inform this decision - share your story in the survey link.
Join us at Muscular Dystrophy Ireland's National Conference on 7 December at Croke Park!
Secure your spot now and be part of a powerful day of coming together as a community to share and learn together. Find out more about our exciting programmes and book your place
Be one of the first 15 households to book your spot at MDI’s Conference and receive a FREE Amazon Echo Show smart display with Alexa for attending!
Be part an unforgettable experience as we come together as a community, fostering meaningful connections, sharing knowledge, and supporting one another. Our conference is a warm and inclusive space for adults and young people living with muscular dystrophy and related neuromuscular conditions, as well as their families, healthcare professionals, and other stakeholders. We look forward to warmly welcoming you and sharing an enriching experience together.
Budget a setback for disabled people, says Federation
The Disability Federation of Ireland has said that while it welcomes the €619m increase in funding for disability services, the Budget overall represents a devastating setback for disabled people unable to work.
Book Now: MDI FSHD Community Gathering – Online | Saturday 11 October
We are delighted to invite you to our FSHD community gathering on Saturday 11 October. Please note this event will now take place online only. It will be opportunity for people living with FSHD and their families to connect as a community and learn together. We have lined up an exciting programme of speakers and topics that we hope you will find informative and empowering.
Help Improve Cancer Care for Individuals with Physical Disabilities
Researchers at DCU are examining the supportive care needs of people with pre-existing physical disabilities who are diagnosed with cancer.
Take part in Make Way Day on Friday 26 September. The revolution starts with you!
Take part in Make Way Day on Friday 26 September. The revolution starts with you!
OPMD Awareness Day Webinar, 23 September at 5pm – Register Now!
As part of Muscular Dystrophy Awareness month, we wish to let you know that 23 September is OPMD Awareness Day, when the OPMD Community comes together to raise awareness of Oculopharyngeal Muscular Dystrophy and to celebrate all members of the OPMD community.
World Myositis Day takes place on 21 September
Myositis is an inflammatory autoimmune condition that can cause muscles to become weak and painful. Idiopathic inflammatory myopathies are an umbrella term for the different types of myositis. These autoimmune conditions mean the body attacks its own muscles, connective tissue, blood vessels, skin, lungs, and other organs. This often occurs together with other symptoms, such as muscle swelling, pain, fatigue, difficulty moving limbs or lifting arms, increased falls, trouble swallowing, and others.
We're all packed up and ready to go for the start of Walk4Ollie 2025!
Paddy Hickey called in to MDI today and the team were delighted to wave him off as he embarks on the third edition of Walk4Ollie on Monday and the road to €100,000 for the Ollie Hickey Fund! We will be following his progress all next week, so watch this space!
Invitation to participate in a research study on Community-Based Healthcare for Individuals with Neuro-Physical Disabilities
Have your say on what matters most when accessing and using community-based healthcare services. A PhD Researcher in Health Economics at University College Cork, is exploring how community-based healthcare services can better support people living with neuro-physical disabilities. The results will give a clearer picture of how to design community-based care that truly meets the needs of people with neuromuscular and other neuro-physical conditions. This evidence will help guide public policy, reduce inequalities, and improve social wellbeing and sustainability.
International Myotonic Dystrophy Awareness Day, 15 September 2025
nternational Myotonic Dystrophy Awareness Day aims to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy.
World Mitochondrial Disease Week, 15 to 21 September 2025
World Mitochondrial Disease Week takes place from 15 to 21 September 2025. It aims to improve the lives of people affected by mitochondrial diseases (mito) and to increase awareness among doctors and the general public.