A European Reference Network (ERN) is a virtual network comprised of healthcare professionals spread around Europe. Their objective is to tackle complex or rare diseases and conditions that necessitate highly specialised treatment and a concentration of knowledge and resources. Indeed, often a disease is so rare that expert knowledge is not available in the patient’s country or region and ERN’s facilitate the exchange of knowledge between healthcare professionals across borders. Each ERN has a coordinator who convenes “virtual” advisory boards of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools to review a patient’s condition for diagnosis and treatment. The patient doesn’t travel but knowledge does.
The first 24 ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. Please find the press release from the European Commission here , their ERN Fact Sheet here and the ERN Brochure here.
For more information about ERNs, please visit the European Commission’s webpages.
ERN flyers (translated)
One of the key objectives of the ERN is to provide cross-border healthcare which means that as a patient you can access expert healthcare services in another EU country, which is not your home country. According to the European Commission, "EU citizens have the right to access healthcare in any EU country and to be reimbursed for care abroad by their home country".
More information about cross-border healthcare can be found on the European Commission's website.
What is the ERN-RND?
We are currently focusing on the following diseases groups:
- Cerebellar Ataxias and Hereditary Spastic Paraplegias
- Frontotemporal Dementia
- Dystonias, Paroxysmal disorders and Neurodegeneration with Brain Iron Accumulation (NBIA)
- Choreas and Huntington‘s disease
- Atypical Parkinsonism syndromes: Genetic PD, Multiple System Atrophy, Progressive Supranuclear Palsy, Corticobasal degeneration
ERN-RND will expand over time in terms of the diseases it covers and in terms of EU countries involved.
ERN-RND factsheet can be found here.
Objectives of the ERN-RND:
- To significantly increase the overall percentage of RND patients with a final diagnosis
- To improve and harmonise care of RND patients across the EU
- To develop, share and implement care pathways and guidelines for all RND groups represented in ERN-RND
- To create, develop and enhance constituents’ capacity to design, implement and supervise RND training, education and capacity building measures at the level of member states and of the network
- To develop a comprehensive and data based European RND cohort to better understand these conditions and thus improve their management and help developing and testing treatments
- To define minimum quality and interoperability criteria for RND registries
EURORDIS, the European umbrella organisation of patient organisations and a non-profit alliance of 798 rare disease patient organisations, has established a European Patient Advocacy Group (ePAG) for each ERN disease grouping. Patient organisations can become ePAG member organisations and patients can become ePAG representatives (2016 and onwards).