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.
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.
If you need to find a new home that’s accessible for your needs, here’s several options that are available to you. Find out more about council housing, housing association homes, private renting and help with buying a home.
After a difficult period of muscle deterioration, Matthew found a passion for flying gave him a new purpose. Matthew has a specially adapted small aircraft that he flies across Northern Ireland in his free time. He shares his journey of learning to become a pilot with the Flying Scholarships for Disabled People charity, the types of adaptations that are available for people with disabilities, and why flying is so important to him.