![[RTÉ News] 'Time is muscle' - decision urged on rare disease medicine](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1780591796791-P9MCQ6K5TEIAM4OA44CR/00246a30-800.webp)
[RTÉ News] 'Time is muscle' - decision urged on rare disease medicine
The parents of a child with a rare muscular disease are urging that the State does "not delay any longer" in making decisions on access to a drug that has been approved for use in Europe but has not been approved for reimbursement in Ireland.
![[RTÉ News] Father of rare disease patient fears losing second son](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/51c88199-b155-4ab1-ad5e-dec7d8adbec8/00246f91-800.webp)
[RTÉ News] Father of rare disease patient fears losing second son
Patients with rare diseases and their families travelled to Leinster House to call for action on access to new medicines.The group is calling on the Government to introduce a dedicated new line item in the Budget for new drugs, a review of the reimbursement scheme and an expansion of the Early Access Programme.
How I Learned to Drive from My Wheelchair and Why It Changed Everything.
Emer drives her wheelchair-adapted car independently — from the button on her keys that automatically opens the back door and deploys the ramp, to the hand controls and dial system that put everything within reach.
Caoimhe Boers: How the iPad paved the way for me as an Artist
For as long as I can remember, I’ve loved stories, animation, fairy tales, and illustration. Growing up, I never really saw myself as “artistic” in the traditional sense. Because of reduced mobility in my hands and arms, drawing with pencil and paper was difficult for me. Things like shading, controlling fine movements, or reaching across a page could be frustrating.
The 4th of June is Assistive Technology Day! A.T Monthly Update June 2026
World Day for Assistive Technology, on June 4, 2026, is the perfect opportunity for everyone— individuals, organizations, businesses, and policymakers from across the world—to come together and champion the importance of assistive technology. The goal? To increase access and raise awareness, especially in low- and middle-income countries.
Vote for MDI in the AIB Community €1M Fund!
Please complete the nomination form between now and 19th June at 5pm to nominate MDI to receive part of AIB's Community €1M Fund to support our services.
Sharing Jake’s experience, Elaine O’Dwyer highlights the value of connection and community through MDI’s Youth Service
“MDI’s youth service and youth clubs have meant so much to our family. Through the service, our 12-year-old son has had the opportunity to build friendships and grow in confidence.”
The Hubert Assistive Technology Programme Monthly Update May 2026
The Hubert Assistive Technology support service offers individualised support to members with a neuromuscular condition by providing them with valuable information, support, and advocacy on how to secure smart technologies that can assist members to improve challenges faced in their everyday lives. Our aim is to create a supportive environment where individuals with a neuromuscular condition can thrive and achieve their full potential. People with disabilities face a variety of challenges, be it at home, in education, employment, healthcare, social isolation, independent living, and funding, we want to assist members in getting assistive technology to help them with these areas. We will contact you to follow up.
MDI Family Camp 2026: Another Magical Weekend!
On behalf of the MDI Youth Team, we just want to say a big thank you to everyone for joining MDI at the Barretstown family camp and making it a fantastic weekend.
Your Rare Disease Journey Matters — Share It in 30 Minutes with Rare Diseases Ireland
Rare Diseases Ireland is testing a new questionnaire designed specifically to capture the healthcare experiences of people living with rare diseases and their caregivers. The questionnaire was built specifically for rare diseases - covering the things standard questionnaires always miss, like how long it took to get a diagnosis, or what it's like coordinating care across multiple specialists.
Take part in #MakeWayDay26 on Friday 29 May 2026
Take part in #MakeWayDay26 on Friday 29 May 2026 by posting photos of everyday obstructions in public spaces. Led by the Disability Federation of Ireland, this campaign raises awareness of barriers faced by people with disabilities and how small changes can make shared spaces more accessible. MDI is proud to support the campaign as a member organisation.
Please show your support for our Campaign for Equal Access to Treatments for Adults Living with Spinal Muscular Atrophy (SMA) at this crucial time!
Listen to Emer’s story. She can’t get treatments due to her age, and she explains our campaign for equal access to treatments for SMA adults in Ireland.
Do you hear the people sing? Well… you could be - at Les Misérables in the 3Arena on 6th June.
We’re delighted to share the next experience from the Jimmy Murray Centre Stage Fund. We have 2 tickets (1 MDI member + 1 guest) available for the spectacular production of Les Misérables at the 3Arena on 6th June.
James Brosnan Scholarship – Foundations in AT Course 2027
Enable Ireland are inviting Assistive Technology users or prospective users who wish to upskill in this area to apply for the James Brosnan Scholarship 2027. This scholarship will enable the successful applicant to register for the Foundations in Assistive Technology course, accredited by Technological University, Dublin (TU Dublin), free of charge. It’s a Level 6 course, with 5 ECTs (European Credit Transfers).
Today is Global Accessibility Awareness Day
For people living with neuromuscular conditions, accessibility is everything, from ramps and adapted transport to digital tools and assistive technology.
It's National Volunteering Week — Could You Be One of Our Volunteers?
It's National Volunteering Week and we couldn't let it pass without saying a huge thank you to the incredible volunteers who give their time to MDI and our community. 🙏💚
MDI’s Counselling and Information Advocacy service formed a key part of the support Claire Ellis received after her diagnosis
My name is Claire and I was diagnosed with the extremely rare, miyoshi distal myopathy last year. Needless to say it came as a shock initially, but then the range of emotions from fear, disbelief, anger, sadness, and especially the isolation of such a diagnosis, felt overwhelming. None of the medical professionals I spoke to around that time had ever heard of my type of MD, and as a single woman in her forties, this further compounded my isolation and distress.
May is Friedreich's Ataxia Awareness Month.
We're thinking of everyone in Ireland living with FA. Your strength, resilience, and spirit inspire us every day.
We're back at Barretstown!
We're back at Barretstown! This weekend marks the third year of our Family Camp partnership, and what a morning it's been welcoming our incredible MDI families through the gates. MDI CEO AlanB reathnach kicked things off by welcoming everyone and setting the tone for a magical weekend ahead — kayaking, horse riding, arts & crafts, music, and so much more.
Please show your support for our Campaign for Equal Access to Treatments for Adults Living with Spinal Muscular Atrophy (SMA) at this crucial time!
Listen to Aoife’s story. She can’t get treatment due to her age. For every day that goes by without access to treatment, she experiences deterioration and a loss of muscle function.