First Programme of Community action in the field of public health (2003-2008)
European Myasthenia Gravis Network [-]
Myasthenia gravis (MG) is a disabling chronic neuromuscular disease affecting mostly females. There is a need for combining the efforts to improve the knowledge on this disease for the following reaso...
Myasthenia gravis (MG) is a disabling chronic neuromuscular disease affecting mostly females. There is a need for combining the efforts to improve the knowledge on this disease for the following reasons: 1. MG is a rare disease (prevalence about 10/100 000); 2. it is heterogeneous; 3. it could be life-threatening, when the respiratory muscles are affected; 4. the diagnosis is not always easy to make; 5. the clinical criterion and therapeutic approaches are different among the European countries; 6. there are aspects in the pathogenesis of the disease that are not yet clear; 7. there is no cure for this disease; 8. many of the drugs used for the treatment of MG have severe side-effects 9. some pharmaceutical molecules, such as anaesthesia agents are life-threatening for the patients.Our main objectives are: 1. To improve knowledge and information on the different forms of MG; 2. To improve standardisation of data collection; 3. To promote education and training, namely for the integration of new member states, 4. To identify important health indicators for MG; 5. To collect data and perform epidemiological studies at European level in order to improve the classification of MG disease` subtypes.
Start date: 01/01/2006 - End date: 01/01/2009
Call: Health Information (Hi 2005)