The main functions of the network will be:

 

  • Provision of clinical care (traditional and non-traditional)
  • The promotion and sustainability of good practice
  • Organisation and management  of all relevant information/data
  • Dissemination  of validated information to patients, other healthcare providers and the public
  • Training and teaching

 

On 15th December 2016 the Board of Member States of ERNs voted to approve all 23 ERN proposals submitted under the first wave. European Reference Networks are networks connecting expert centres in the field of rare diseases and specialised healthcare, organised across borders. This concept has been developing and maturing over the past five years and represents a major innovation in care for Europe’s 30 million rare disease patients: although pan-European structures exist in the research domain, this is the first such enterprise in the health sphere. ERNs have been organised around broad disease groups, to ensure that no patient with a rare disease is left ‘without a home’ under an ERN. This is a major innovation for rare diseases in Europe, involving 370 hospitals and almost 1000 highly specialised units across 26 Countries (25 EU Member States + Norway).

The full list of approved ERN applications is available via the official EC webpage. Further details may be found on the dedicated RD-ACTION webpage. Euro-NMD was one of the 23 approved ERNs. We are happy to inform that all of the 61 Healthcare Providers that applied to be part of EURO-NMD have been approved. We will all enjoy working together under the roof of the European Reference Network for Rare Neuromuscular Diseases, EURO-NMD from 2017. Whether EURO-NMD will receive funding for coordination activities from the European Commission will be determined separately, and we expect to hear in the first quarter of next year.

Thank you all for the immense effort and support during the preparation of the EURO-NMD and HCP applications, which is evidence for the excellent collaborative spirit amongst neuromuscular centres and experts in Europe.