Rare Diseases Ireland are asking you to tell them your experience of healthcare while living with a rare condition in Ireland. They want to understand the challenges people living with rare conditions face accessing diagnosis, treatment and care. With your help they can advocate for improved health services for everyone living with rare conditions in […]
‘Accepting and Connecting with Muscular Dystrophy’ – new book by MDI member
Our warm congratulations to MDI member, Siobhán Dunleavy, on the publication of her book, ‘Accepting and Connecting with Muscular Dystrophy’. We are really looking forward to reading it! Siobhán, aged 29 years old, was diagnosed with muscular dystrophy at 21. In her book, she tells her personal story of how being diagnosed with a life-changing […]
We Act Ireland launches today!
We’re so excited to be part of @WeActIreland launching today – it’s all about celebrating the amazing stories behind Ireland’s charities and community groups. This video is just a snapshot of the brilliant work happening across the country every single day. #WeAct You can watch it here.
PPI Research
Public and Participant Involvement in Research (PPI) Muscular Dystrophy Ireland are inviting people living with neuromuscular conditions, their carers, and their families, to join a panel of PPI contributors. The purpose of the PPI panel is to support research and researchers seeking new treatments and therapies for neuromuscular conditions. This is an opportunity for people […]
Cork launch of campaign for more neurology nurses
Muscular Dystrophy Ireland is supporting the #patientsdeservebetter campaign for more neurology nurses which is coming to Cork for the month of November. Register for the online launch at 12pm on 2 November here. And you can find out more about the campaign here.
WEBINAR ON AIDS / ADAPTATIONS TO ASSIST DISABLED DRIVERS
Join Disabled Drivers’ Association Ireland at 5pm on this Thursday 21st October for a FREE webinar. This webinar will explore the various aids / adaptations available to assist disabled drivers. It will cover: 1. Helpful Tips 2. Most Common Driver Adaptations – Hand Controls, Steering Aids, Left Foot Accelerator 3. Seating, Storage and Lift. Register in […]
What has #Budget2022 done for people with disabilities? Read summary of key disability measures to find out
Disability Federation of Ireland (DF)I have analysed how Budget 2022 will impact on people with disabilities, their families and disability organisations. While there are some welcome measures, the Budget does not do enough to deliver on the Department of Health’s Disability Capacity Review. It also failed to recognise the significant extra cost of disability faced […]
Disability Federation of Ireland baffled that the Budget is not meeting its minimum investment of €350m in disability services
The Government has estimated €350-€600 million would be needed from Budget 2022 to address unmet need in disability services[1]. Today’s Budget shows they are ignoring their own advice, which is baffling to the Disability Federation of Ireland, DFI. “As it stands, disability services funding is only slightly increased beyond last year’s Budget level. The Government’s […]
Webinar: Gene Therapy Clinical Update
Parent Project Muscular Dystrophy has invited Sarepta Therapeutics to present details of the EMBARK clinical trial (SRP-9001-301). They are hosting a webinar on Wednesday, October 13th at 3 PM EST. PLEASE NOTE: Webinar takes place at 3pm USA Eastern Standard Time which is 8pm IRISH TIME. For more details see: http://join.parentprojectmd.org/site/MessageViewer?em_id=31904.0&dlv_id=26669
Agreement reached on pricing of Zolgensma for treatment of spinal muscular atrophy (SMA)
MDI is delighted to share the news that Belgium, Ireland and the Netherlands have reached an agreement on the pricing of Zolgensma, a gene therapy for the treatment of spinal muscular atrophy (SMA). Zolgensma will be reimbursed for two specific groups of young patients in all three countries. It is the first time that Belgium, […]
