European reference networks (ERNs) help professionals and centres of expertise in different countries to share knowledge.
ERNs should:
- apply EU criteria to tackle rare diseases requiring specialised care
- serve as research and knowledge centres treating patients from other EU countries
- ensure the availability of treatment facilities where necessary
The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU countries.
24 ERNs are working on a range of thematic issues.
Seven ERNs related to pediatric neurology are:
ERN EpiCARE: European Reference Network on epilepsy (Website)
ERN-RND: European Reference Network on neurological diseases (Website)
ERN Endo: European Reference Network on endocrine conditions (Website)
ERN EYE: European Reference Network on eye diseases (Website)
ERN ICA: European Reference Network on inherited and congenital anomalies (Website)
ERN ITHACA: European Reference Network on congenital malformations and rare intellectual disability (Website)
ERN NMD: European Reference Network on neuromuscular diseases (Website)
ERN Paedcan: European Reference Network on Paediatric Oncology (Website)
ERN rita: care of patients with Rare Immunological Disorders (Website)
MetabERN: European Reference Network on hereditary metabolic disorders (Website)
The focus of European Reference Networks for rare diseases is to improve clinical care and expertise in Europe and to promote collaboration between clinical centres. At this stage this is a scheme for members of the EU.
Here at the EPNS it is our aim to ensure that childhood neurological disorders are represented in the relevant networks and consequently many EPNS members and representatives from the EPNS board are involved in one or more ERNs, either as part of the ERN board or as a specialized centre. This includes the epilepsy, neurometabolic and neuromuscular groups.
This is an important scheme for the EPNS and we welcome feedback from EPNS members who participate in the ERNs.