About us

What is an ERN?

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.

For more information about ERNs, please visit the European Commission’s webpages.

What are ERNs and how do they work?

What is the ERN-RND?

The European Reference Network for Rare Neurological Diseases (ERN- RND) aims to address the unmet needs of more than 500,000 people living with RNDs in Europe. 60% of those are still undiagnosed. Through coordination and knowledge transfer, ERN-RND shall establish a patient-centred network to address the needs of patients with RND of all age groups, with or without a definite diagnosis, by implementing an infrastructure for diagnosis, evidence-based management, treatment and collection of patient data.

We are currently focusing on the following diseases groups:

  • Cerebellar Ataxias and Hereditary Spastic Paraplegias
  • Frontotemporal Dementia
  • Dystonias, Paroxysmal disorders and Neurodegeneration with Iron Brain Accumulation (NIBA)
  • Leukodystrophies
  • Choreas and Huntington‘s disease
  • Atypical Parkinsonism syndromes: Genetic PD, Multisystem Atrophy, Progressive Supranuclear Palsy, Corticobasal degeneration

ERN-RND will expand over time in terms of disease covered and in terms of EU countries involved.

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

EXPERT CENTRES for Rare Neurological Diseases

You will find below a list of our Expert Centres.

An overview and information on the ERN-RND centres can be found at Orphanet

Cerebellar Ataxias and Spastic Paraplegias

Belgium

Université libre de Bruxelles
University Hospitals Leuven

Czech

Motol University Hospital

France

Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salepétrière

Germany

Universitätsklinikum Tübingen
Universitätsklinikum Bonn
Universitätsklinikum Schleswig-Holstein
Klinikum der Universität München

Hungary

Semmelweis University
University of Pécs

Italy

Foundation IRCCS neurological institute Carlo Besta - Milan
AOU Siena
Pediatric hospital Bambino Gesù, Rome

Netherlands

University Medical Center Groningen
Nijmegen Radboud University Medical Center Nijmegen

Poland

University Hospital in Krakow

Slovenia

University Medical Centre Ljubljana

Spain

Hospital Clínic i Provincial de Barcelona y Hospital de Sant Joan de Déu
Hospital Universitari Vall d'Hebron

UK

University College London Hospitals NHS Foundation Trust

Choreas and Huntington's Disease

Belgium

University Hospitals Leuven

Czech

General University Hospital in Prague

France

Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salepétrière
Assistance Publique-Hôpitaux de Paris, Hôpital Henri-Mondor

Germany

Universitätsklinikum Tübingen
Universitätsklinikum Schleswig-Holstein
Klinikum der Universität München
Universitätsklinikum Ulm

Hungary

Semmelweis University
University of Pécs

Italy

Foundation IRCCS neurological institute Carlo Besta - Milan
IRCCS Clinical Institute Humanitas - Rozzano
AOU Siena
Pediatric hospital Bambino Gesù, Rome

Lithuania

Vilnius University Hospital Santariškių Klinikos

Netherlands

University Medical Center Groningen

Slovenia

University Medical Centre Ljubljana

Spain

Hospital Clínic i Provincial de Barcelona y Hospital de Sant Joan de Déu

UK

University College London Hospitals NHS Foundation Trust

Dystonias, paroxysmal disorders (non-epileptical ones) and Neurodegeneration with Brain Iron Accumulation

Bulgaria

University Neurological Hospital “St. Naum” Sofia

Czech

General University Hospital in Prague

France

Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salepétrière

Germany

Universitätsklinikum Tübingen
Universitätsklinikum Bonn
Universitätsklinikum Schleswig-Holstein
Klinikum der Universität München
Universitätsklinikum Ulm

Hungary

Semmelweis University
University of Pécs

Italy

Foundation IRCCS neurological institute Carlo Besta - Milan
IRCCS Clinical Institute Humanitas - Rozzano
AOU Siena
Pediatric hospital Bambino Gesù, Rome

Netherlands

University Medical Center Groningen
Nijmegen Radboud University Medical Center Nijmegen

Poland

University Hospital in Krakow

Slovenia

University Medical Centre Ljubljana

Spain

Hospital Clínic i Provincial de Barcelona y Hospital de Sant Joan de Déu

UK

University College London Hospitals NHS Foundation Trust

Fronto­temporal dementia

Belgium

University Hospitals Leuven

France

Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salepétrière

Germany

Universitätsklinikum Tübingen
Klinikum der Universität München
Universitätsklinikum Ulm

Hungary

Semmelweis University
University of Pécs

Italy

Foundation IRCCS neurological institute Carlo Besta - Milan
IRCCS Clinical Institute Humanitas - Rozzano
AOU Siena

Netherlands

Erasmus MC: University Medical Center Rotterdam

Slovenia

University Medical Centre Ljubljana

UK

University College London Hospitals NHS Foundation Trust

Leuko­dystrophies

France

Assistance Publique-Hôpitaux de Paris, Hôpital Robert-Debré

Germany

Universitätsklinikum Tübingen
Klinikum der Universität München

Hungary

Semmelweis University

Italy

Foundation IRCCS neurological institute Carlo Besta - Milan
AOU Siena
Pediatric hospital Bambino Gesù, Rome

Netherlands

VU University Medical Center Amsterdam
University Medical Center Groningen

UK

University College London Hospitals NHS Foundation Trust

Atypical parkinsonian syndromes: Genetic PD, Multisystem Atrophy, Progressive Supranuclear Palsy/Corticobasal degeneration

Belgium

University Hospitals Leuven

Czech

General University Hospital in Prague

France

CHU de Bordeaux
CHU de Toulouse

Germany

Universitätsklinikum Tübingen
Universitätsklinikum Bonn
Universitätsklinikum Schleswig-Holstein
Klinikum der Universität München
Universitätsklinikum Ulm

Hungary

Semmelweis University
University of Pécs

Italy

Foundation IRCCS neurological institute Carlo Besta - Milan
IRCCS Clinical Institute Humanitas - Rozzano
AOU Siena

Netherlands

Nijmegen Radboud University Medical Center Nijmegen

Poland

University Hospital in Krakow

Slovenia

University Medical Centre Ljubljana

Spain

Hospital Clínic i Provincial de Barcelona y Hospital de Sant Joan de Déu

UK

University College London Hospitals NHS Foundation Trust

Vorlage unsichtbar

Belgium
Bulgaria
Czech
France
Germany
Hungary
Italy
Lithuania
Netherlands
Poland
Slovenia
Spain
UK

Work Packages

Activities of the ERN-RND are structured in eight dedicated Work Packages (WP), each one led by an ERN-RND member:

WP Title Leading HCPs
1 Coordination, management, communication and quality assurance of ERN-RND activities University Hospital Tübingen
2 Evaluation of ERN-RND activities University Hospital Tübingen
3 RND diagnostic pathway Reference Centre Neurogenetics Paris
4 Expert RND care coordination University Medical Centre Groningen
5 Training, education and capacity building Semmelweis University Budapest
6 Information sharing and disease resources University Hospital Tübingen
7 Guidelines, pathways and best practice Azienda ospedaliera Universitaria Senese
8 Registries and research University Hospital Bonn