Ombudsman Peter Tyndall has said that personal transport supports for people with disabilities are inadequate, unfair and inequitable. In his report, ‘Grounded: Unequal access for people with disabilities to personal transport schemes’, published today, the Ombudsman says that both he and his predecessors received many complaints about three schemes – the Motorised Transport Grant, the […]
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Important step towards adoption of #UNResolution4Rare
We are delighted to share the news that the resolution, ‘Addressing the challenges of persons living with a rare disease and their families’, was unanimously adopted by the Third Committee of the United Nations on 15 November. This is an important milestone and step towards adoption of #UNResolution4Rare at the General Assembly in December. Ireland […]
‘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 […]
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, […]
MDI Pre-Budget 2022 Submission
MDI has made a Pre-Budget 2022 Submission to government with recommendations based on issues raised by MDI members, as well as by the umbrella organisations we belong to. You can read the submission by clicking on this link MDI pre budget 2022 submission 3 August 2021
Registration for 12 to 15-year-olds to get a vaccine opens on Thursday 12 August
Registration for 12 to 15-year-olds to get a vaccine will open on Thursday 12 August. You can find out how to get a vaccine for this age group here. The HSE particularly recommends that 12 to 15-year-olds get vaccinated if they have a health condition that puts them at higher risk of severe illness from […]
Powerchair football
Would you like to get involved in powerchair football in the South-East? Wexford-based MDI member, Conor Doyle, is interested in starting a powerchair football team in the South-East. If you are interested, he’d be delighted to hear from you. All genders and ages (12 years and upwards) are welcome! Training would take place in either […]
Orphan Drugs Bill
Legislation to streamline the HSE decision-making process on orphan drugs We are pleased to see that legislation is being brought forward to the Dáil that will seek to streamline the HSE decision-making process on orphan drugs. Orphan drugs are medicinal products intended for diagnosis, prevention or treatment of life-threatening or very serious conditions that are […]
NTA Survey of Taxi’s and Hackneys
The National Transport Authority (NTA) is committed to the provision of high quality, accessible, sustainable transport connecting people across Ireland. In furtherance of this aim NTA has engaged Behaviour & Attitudes, an independent market research company based in Dublin, to conduct this survey with the aim of getting information on the demand, delivery and accessibility levels of […]
Looking Beyond COVID-19: The Future of Neurological Care
Description The pandemic has led to reflection and debate across healthcare in Ireland as to how services can recover from disruption and potentially overcome some of the systemic issues that impacted our health system pre COVID-19. Neurological care services are embracing new treatment approaches and technologies including those developed here in Ireland. On the other […]
