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Towards a European Reference Network (ERN) on rare neuromuscular diseases (NMD)

The first European Reference Networks (ERNs) on rare diseases will be launched by the end of 2016. Accordingly, the European Commission has launched a call for interest on ERNs on March, 16th 2016. The ERN on rare neuromuscular diseases (NMD) is one of the 22 thematic groups that is going to be set-up.

ERNs aim to facilitate access to diagnosis and treatment in rare or low prevalence complex diseases or conditions by pooling existing highly specialised healthcare providers across the EU who will share knowledge, experience, medical research, teaching, training, ressources and use relevant communication tools to make expertise travel rather than the patients. This will also reduce inequalities of treatment within the European Union. This collaboration will help with the adoption and spread of innovations in medical science and health technologies. A NMD ERN can act as a focal point for medical training and research, helping to establish an European CV, helping to disseminate standards of care and general knowledge about NMD.

It is expected that ERNs will have a high profile and recognition in their particular domain. This will attract the best experts and more patients and although ERNs are supposed to facilitate the cross-border health care it is expected that the pooling of resources and the e-Health solutions will decrease the burden of travelling for the patients.

The Networks and their members will be in a good position to apply for more research funding and further develop and accelerate basic and translational research. 

Please find here the call for application 2016

Timeline for the Setting up of the ERNs:

  • 2nd half 2015 Call for selection of independent bodies to evaluate ERN
  • January-May 2016 Call for Networks
  • 2nd half 2016 Establishment of ERN
  • End of 2016 Network is operational
  • 2020 Evaluation