On Friday, August 3, 2018, the Neuromuscular Disease Foundation (NDF) with support from Ultragenyx Pharmaceutical, Manchester Metropolitan University and Muscular Dystrophy UK (MDUK) will host the first ever Patient Day on GNE Myopathy in the UK. The event has been organised with the assistance of the Manchester Met Conference and Events Team and will be held on campus, at the Business School.
Scientists and experts in the field from the U.S.A., Israel and UK will gather with patients at Manchester Metropolitan University. Topics to be covered include current scientific research, upcoming therapy trials, understanding potential treatments, maintaining functional abilities and the psychological aspects of living with a neuromuscular condition. Speakers include representatives from the National Institutes of Health (U.S.A.), Hadassah Hospital (Israel), Newcastle University (UK) and MDUK.
GNE Myopathy, also known as Hereditary Inclusion Body Myopathy (HIBM) is a rare, genetic disease starting at the feet, causing muscles to slowly weaken. GNE Myopathy is not life-threatening, but it may lead to physical debilitation within two decades of symptoms’ onset. Symptoms usually begin to develop in early adulthood. GNE Myopathy exists in all races and nationalities, worldwide.
The Neuromuscular Disease Foundation (NDF) is a non-profit organisation working to enhance the quality of the lives of people living with GNE Myopathy (HIBM) through advocacy, outreach and funding critical research focused on treatments and a cure. For more information, visit curehibm.org.