European Neuromuscular Centre (ENMC)
The ENMC is an international organisation that supports research for neuromuscular conditions and strives to facilitate communication among scientists and clinicians working in the field. It funds and organises about eight workshops a year about neuromuscular conditions to encourage and facilitate collaborative research.
The workshops are chosen on the basis of scientific merit and each application is objectively assessed by the ENMC Research Committee, a group of internationally recognised experts in the field.
To date, the ENMC has organised around 200 workshops on a variety of neuromuscular disorders and published over 125 related publications. The workshops have been attended by over 1,600 participants from around the world.
The ENMC is funded by a group of patient and healthcare associations and pharmaceutical industries from around Europe, including Muscular Dystrophy UK. Our Director of Research and Innovation, Dr Kate Adcock, is a member of the ENMC Executive Committee.
Find out more at: www.enmc.org/
TREAT-NMD is a global network for researchers and clinicians in the neuromuscular field. It promotes an infrastructure to ensure that potential treatments reach patients as quickly as possible. It brings together leading specialists, patient groups and industry representatives to promote best practice and ensure people are ready for the trials and therapies of the future.
Treat-NMD was launched in 2007 with the aim of ‘reshaping the research environment’ in the neuromuscular field. It has been instrumental in developing tools needed to bring new therapeutic approaches from the laboratory into the clinic.
Muscular Dystrophy UK has worked closely with this initiative to promote patient registries. We are currently supporting a registry for people with facioscapulohumeral muscular dystrophy (FSH) and myotonic dystrophy. We have also worked together to establish best practice care guidelines for people with a number of muscle-wasting conditions.
Find out more at: www.treat-nmd.org/
In 2013, Muscular Dystrophy UK established the Duchenne Forum, a funding partnership between six UK charities dedicated to funding research into Duchenne muscular dystrophy. This collaboration between Muscular Dystrophy UK, Alex’s Wish, the Duchenne Children’s Trust, Duchenne Research Fund, Joining Jack and Harrison’s Fund will accelerate progress in the search for effective treatments and eventually cures.
By working in collaboration, the Duchenne Forum has been able to make a larger investment to move promising therapies forward. It also enables us to avoid duplication and keep administrative costs to a minimum.
MDUK is excited to excited to be working in partnership with SMA UK as part of the 2021 grant round. MDUK and SMA UK hope to support one 4-year PhD studentship in SMA research.
MDUK and Cure CMD are co-funding a research project into LMNA-CMD. Led by Dr Gisèle Bonne, at the INSERM-Sorbonne Université-Center of Research in Myology in Paris, the research is investigating genetic changes that alter the severity of the condition, known as modifiers. You can read more about the research on the lay summary page.