“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.”

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.

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). 

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.