Receiving the best care can dramatically improve patients' quality of life and even prolong life expectancy. From diagnosis through to physical therapy, this section of the website aims to make all the information about caring for someone with a neuromuscular disease as accessible as possible.
The relative rarity of individual neuromuscular diseases means that until recently there has not been any consensus among doctors about how best to care for patients, and care standards differ not only from country to country but also even within individual countries. Not only does this impact on quality of life, it also makes clinical trials of promising new treatments much harder to carry out, because it is impossible to compare results from different centres if patients are cared for in different ways.
By producing consensus guidelines agreed by doctors and patient groups across the world, it is possible to improve this situation and make best-practice care more widespread across the world. As well as the academic consensus documents, 'family friendly' guides have been created, written in a style that is more accessible to those without a medical background.
An international consensus document detailing recommendations for best-practice care for SMA was published in the Journal of Child Neurology in 2007.
The product of an extensive review process by 84 international experts this major international consensus document sets out best practice in care for DMD
An international consensus document detailing recommendations for best-practice care for CMD was published in the Journal of Child Neurology in November 2010.
Eurogentest and Orphanet have in collaboration produced each a database particularly useful for finding accredited laboratories for diagnosis of neuromuscular disorders