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 – […]
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Survey on transition from paediatric to adult care among young people living with Duchenne
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 […]
Accessible Offaly – Online Survey for all adults with disabilities or long term conditions who live in Offaly
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 […]
Seeking research participants – Understanding and improving health screening access for disabled people
For more information click here.
Charcot-Marie-Tooth UK Conference 6 and 7 May
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.
FSHD European Survey Launched
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 […]
CMS Research and Treatment – online event 15 December
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 […]
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 […]
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
Paediatric-focused seminar on spinal muscular atrophy (SMA) from MDUK
Join Muscular Dystrophy UK on Monday 23 August 10am-12pm for their MDUK Muscles Matter 2021 online seminar on spinal muscular atrophy (SMA). The session will be paediatric-focused, with a panel of researchers, paediatric neurologists and physiotherapists. There will be presentations on the latest research into SMA, discussions on how to manage the condition as well […]
