The Economic and Social Research Institute (ESRI) has published research on Personal Assistance Services in Ireland. It describes inconsistencies experienced by disabled people in accessing a PA service and its current limitations. You can view the full report here and a summary here. Overall, the evidence shows satisfaction among many service users, but suggests that […]
Join Muscular Dystrophy UK for their Muscles Matter 2022 seminar on spinal muscular atrophy (paediatrics) on Thursday 8 December 10am – 12pm. It will cover the latest research into as well as information and advice on living well. Speakers will include Professor Laurent Servais MD, PhD who is Professor of Paediatric Neuromuscular Disease at the […]
Join Muscular Dystrophy UK for their upcoming Muscles Matter 2022 online seminar on Duchenne muscular dystrophy (adults) which will take place on Monday 5 December 2022 from 10am to 12pm. Speakers will include Professor Ros Quinlivan, Professor of Neuromuscular Disease, from UCL Queen Square Institute of Neurology. The session will cover the Adult North Star Network, and […]
A journalist working in the RTÉ Newsroom is putting together some pre-budget coverage for their website and social media that will show people’s moods and views ahead of the budget with the cost of living crisis and energy hikes. They would really like to focus on the views of people with disabilities and carers – […]
Have your say on moving into adulthood. We wish to share a survey from PTC Therapeutics to get answers to important questions about transition from paediatric to adult care among young people living with Duchenne to better understand the transition experience between paediatric and adult services for […]
The Accessible Offaly Survey is asking disabled people and people with long term conditions who live in Offaly to tell Offaly Disability Equality Network (ODEN) about your experience of access and being part of the community in Offaly. The survey is now open and will be open for the month of July 2022. You can […]
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Charcot-Marie-Tooth UK’s Conference 2022 will be held online on Friday 6 and Saturday 7 May. Find out more about their excellent line-up of speakers, including Professor Mary Reilly, the UK’s leading authority on CMT, and book here.
An important study between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University has launched this week. There is a growing interest from several pharma companies to run clinical trials in FSHD in Europe. FSHD Europe is working with the Pharmaceutical Industry to ensure that when trials are developed, they […]
Myaware – UK charity dedicated to the care and support of people affected by myasthenia – will be hosting a Zoom session on Research and Treatment regarding Congenital Myasthenia Syndrome (CMS) with Dr Sithara Ramdas, Consultant Paediatric Neurologist. Dr Ramdas is based at the John Radcliffe Hospital in Oxford and has extensive experience working with […]