MDI Quick Links

Children’s Health Ireland (CHI) has been recognised by Italfarmaco, the manufacturer of Givinostat, for achieving the fastest turnaround time in Europe between the treatment becoming available in Ireland and its first prescription This is a significant achievement, made possible through the determination of families who campaigned for access to the treatment, the commitment of the CHI multidisciplinary team, and collaboration with Muscular Dystrophy Ireland (MDI).

I was delighted to attend the all Island Biobank symposium today.  Establishing a dedicated biobank for muscular dystrophies and related neuromuscular disorders in Ireland could help in bridging gaps in our current medical research infrastructure.  

MDI are delighted to inform you of our upcoming webinar, Navigating Third-Level Education: Information and Support.

This webinar will be hosted online by MDI and will include presentations from AHEAD, and MDI members, Dr. Aoife McNicholl and Matthew Patrick Sharkey as well as from MDI.

Are you thinking about your post school options or are you already in college wondering about employment opportunities when you graduate? This webinar will be aimed at students and prospective students living with muscular dystrophy and related neuromuscular conditions, as well as their parents and families.

Muscular Dystrophy Ireland (MDI) is delighted to announce an update to its wheelchair accessible loan vehicle service for members in the Southern Region. As part of MDI's ongoing commitment to supporting independence, inclusion, and quality of life for people living with neuromuscular conditions, the previous Nissan NV400 has now been replaced with a Kia Sedona Wheelchair Accessible Vehicle (WAV).

Muscular Dystrophy Ireland (MDI) is pleased to share our new research landscape review, Neuromuscular Research in Ireland: Trends, Gaps & Opportunities (1990–2025), together with an Executive Summary of its key findings.

In collaboration with the Now Group, Transport for Ireland (TFI) has introduced a new “Ramp Please” JAM Card for bus passengers. The card enables customers to discreetly let the driver know that they require the ramp to be lowered, without having to make a verbal request. This simple addition helps make bus travel more accessible, inclusive and comfortable for passengers who may face communication barriers or who prefer a non-verbal way to communicate their needs.

I was delighted to receive an invite from the Minister of Health Jennifer Carol MacNeil to attend the Irish Presidency Conference on Clinical Trials and Medicine Access today. The conference is essentially about how Europe can make the journey from medical research to patient access to medicines faster, more effective and more sustainable. Looking at why there can be a significant gaps between a medicine being developed/approved and patients actually getting access to it across Europe!!