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 ERNs 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.
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
- Chorea and Huntington‘s disease
- Dystonias, Paroxysmal disorders and Neurodegeneration with Brain Iron Accumulation (NBIA)
- Frontotemporal Dementia
- 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.
ERN-RND brochure for members 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
Institute of Medical Genetic & Applied Genomics
University Hospital Tübingen
Clinical Coordinator ERN-RND
Department of Neurology
University Hospital Tübingen
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).
Friedreich’s Ataxia Research Alliance Ireland (FARA)
Representative for: Ataxia/HSP
Czech Association of Atypical Parkinsonian Syndromes (Spolek pro Atypické parkinsonské syndromy)
Representative for: Atypical Parkinsonian Syndromes
ERN-RND members stories
We collect stories of our ERN-RND members to give you an overview of the different roles they fulfill within the rare neurological disease community.
Activities of the ERN-RND are structured in eight dedicated Work Packages (WP), each one led by an ERN-RND member: