Save the date for our FSHD COMMUNITY GATHERING
We are delighted to continue our series of condition-specific community gatherings by hosting our FSHD COMMUNITY GATHERING, 11:00 – 16:00, Saturday, 11 October 2025
The HSE has launched an updated Health Passport App
This App includes sections on Critical Information, Personal Information, Communication, Decision Making, Medical History, Food and Drink, and Personal Care. There is an option to email the passport, if required, to a health or social care professional prior to an appointment or admission to the hospital.
‘Time Is Muscle’: MDI Supports Families in Campaign for Rapid Review of Duchenne Treatment Givinostat
Please join us in asking your local TDs and senators to keep this matter on the political agenda by attending a briefing on the campaign at the Audio-Visual Room, Leinster House at 2.30pm on Wednesday 11 June. and leveraging your role as you elected representative to highlight the importance of timely and planned action. Time is muscle and delays in reimbursement risk excluding eligible children simply because the disease progresses while they wait.
Help Drive Positive Change: Join MDI’s Advocacy Committee.
MDI’s Advocacy Committee brings together people with lived experience of muscular dystrophy and related neuromuscular conditions – people living with the conditions and family members – to advocate for positive change in society on areas that affect the lives of people living with neuromuscular conditions and to inform the development of MDI’s services.
Pathways: Navigating third level education for students with neuromuscular conditions
MDI’s latest report emphasises the urgent need for improved accessibility in Irish third level institutions. Inclusive Pathways: Navigating third level education for students with neuromuscular conditions highlights the challenges faced by students with neuromuscular conditions in accessing higher education.
Inclusivity for Persons With Disabilities? The Electoral Rights of Persons With Disabilities in the European Union
The first instalment in the 2024 Institute of International and European Affairs (IIEA) Disability Policy series will take place this Friday 16 February at 1pm when Dr Alejandro Moledo, Deputy Director of the European Disability Forum, will discuss the ‘The Electoral Rights of Persons with Disabilities in the European Union’ on a webinar.
