Dr Grace McMacken is setting up the first specialist clinic in Northern Ireland for people who have symptoms of a muscle wasting condition but don’t yet have a genetic diagnosis. The clinic aims to improve diagnosis, care, and access to treatment.
On Tuesday (22 March) the Northern Ireland Department of Health/An Roinn Sláinte published the Northern Ireland Rare Diseases Action Plan.
MDUK will today call for improved multidisciplinary care in Northern Ireland at an All-Party Parliamentary Group.
We have joined forces with Spinal Muscular Atrophy UK (SMA UK) and Pathfinders Neuromuscular Alliance to raise concerns of people living with muscle wasting and weakening conditions as a result of potential significant changes at the Belfast Health and Social Care Trust adult neuromuscular service in the coming weeks.
We have teamed up with Pathfinders Neuromuscular Alliance and SMA UK to bring you a day full of information and ideas to help you navigate adulthood with a neuromuscular condition.
Suzanne is a researcher at the University of Sheffield and Pathfinders Neuromuscular Alliance. She lives with spinal muscular atrophy (SMA). Suzanne shares her latest research projects on what it truly means to breathe, her own experiences of bone health and why this study is important, and her excitement about being back on our Northern Ireland Council.