INTRODUCTION to ENMC
Most neuromuscular disorders are rare (orphan) diseases, meaning that fewer than 1 in 2000 people are affected. They all cause a weakening of muscles, which leads to serious disability and are often life-threatening. Because of this, international collaboration is extremely important to accelerate our knowledge and discovery of new medicines in the field of neuromuscular diseases.
The European Neuromuscular Centre (ENMC) was founded in 1992 by a group of European patient associations that dedicated itself to bring leading researchers and clinicians from all over the world together. To achieve this goal, ENMC applies a concept unique in the scientific world, which consists of organising and financing workshops on application basis. Topics of the workshops vary from outcome measures, clinical trial readiness and preclinical studies, to diagnosis and care for all neuromuscular diseases.
ENMC Mission statement
“The mission of ENMC is to encourage and facilitate communication and collaboration in the field of neuromuscular research with the aim of improving diagnosis and prognosis, finding effective treatments and optimizing standards of care to improve the quality of life of people affected by neuromuscular disorders.”
Achievements by ENMC
ENMC is dedicated to inform the neuromuscular community via publications in scientific journals, its website and through social media of the progress being made at the workshops with regards to neuromuscular research and new guidelines, for instance in standards of care. ENMC is proud of its active patient participation giving patients a chance to discuss their needs with scientists and clinicians.
ENMC has a longstanding and successful history in bringing consortia together. Today ENMC is proud of:
- hosting more than 270 workshops
- the results from more than 90% of the workshops being published in “Neuromuscular Disorders” (Elsevier)
- an active network of over 4500 researchers, clinicians and patients with whom ENMC is in regular contact
- participants from more than 75 countries creating international cross-talk and collaboration in trials
ENMC: A real step forward in connecting people world-wide to make progress in the treatment and care of patients with neuromuscular disorders.