About us

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.

Cross-Border Healthcare

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?

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 Brain Iron Accumulation (NBIA)
  • Leukodystrophies
  • 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.

 

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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

 

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.

Patient Advocates

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).

CATHALIJNE VAN DOORNE

Cathalijne van Doorne

Euro-ataxia and European Federation of Neurological Associations
Representative for: Ataxia/HSP
Email: cathalijne.van.doorne@telenet.be

Mary Kearney

Friedreich’s Ataxia Research Alliance Ireland (FARA)
Representative for: Ataxia/HSP
Email: marykearney@gmail.com

Tsveta Schyns-Liharska

European Network for Research on Alternating Hemiplegia (ENRAH)
Representative for: Paroxysmal Disorders
Email: ts@enrah.net

Astri Arnesen

European Huntington Association
Representative for: Choreas & Huntington's Disease
Email: astri@eurohuntington.org

Lori Renna Linton

Euro-HSP
Representative for: Ataxia/HSP
Email: lori.rennalinton@gmail.com

Amanda Rose

Rare Dementia Support
Representative for: Frontotemporal Dementia
Email: amanda_rose86@outlook.com

Lubomír Mazouch

Czech Association of Atypical Parkinsonian Syndromes (Spolek pro Atypické parkinsonské syndromy)
Representative for: Atypical Parkinsonian Syndromes
Email: SpolekproAPS@seznam.cz

Foto: Stephan Röhl

Monika Benson

Dystonia Europe
Representative for: Dystonia
Email: monika.benson@dystonia-europe.org

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

Monitoring

European Reference Networks are being monitored according to 18 indicators, please find the the full document here.