Rare Disease Day

GNE Myopathy UK Patient Day


GNE Myopathy UK Patient Day:

'Educate ~ Enable ~ Empower'

The first national meeting for those affected by GNE myopathy (GNEM) has been organised with the support of the Neuromuscular Disease Foundation (NDF) and Ultragenyx Pharmaceutical.

A great, modern University Manchester Metropolitan University, in a great global city, will host this significant event. Venue Access Guide.

The aim of the day is to create an unprecedented gathering of international GNEM experts, representatives from Muscular Dystrophy UK (MDUK) and UK health care professionals with patients, caregivers. Individuals affected by GNEM can come together to hear about the latest research into treatment and care information, share experiences and find mutual support.

(Full agenda available upon request).

Lunch and refreshments will be provided - If you have any dietary and/or specific access requirements, please let us know.

On-site accommodation and/or limited travel support is available for patients (and their caregivers) - Please contact us ASAP if you require this provision.

NB. Photos and video will be taken for use in relevant print and online materials, on social and other media. If you do not wish your images to be used, please tell us ASAP.

Contact: Mona Patel, GNEM Patient Advocate, NDF and Equality & Diversity Specialist, Manchester Met Uni.

Email: mona.patel@mmu.ac.uk / Tel: 0161 247 3301


"Once you choose hope, anything's possible" ~ Christopher Reeve

For registering and any further details click on the link below: https://www.eventbrite.co.uk/e/gne-myopathy-uk-patient-day-symposium-registration-44756821859

Please help spread awareness for the GNEM Community by posting your comments and photos on social media.

  • For Twitter use #GNEMyopathy and #CureHIBM and tag us using @CureHIBM
  • For Facebook use @NDF.HIBM and @GNE Myopathy UK