eanpages
  • General interest
    • All Executive Page Paper of the Month EAN News EAN Congress news COVID-19 Interviews
      Executive Page

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      Paper of the Month

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      Paper of the Month One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      EAN News

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      Executive Page

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      Executive Page Dear EAN members, dear friends, It is my pleasure to give you an update on behalf of the EAN Scientific Committee following a busy year since my appointment as chair. It has been a privilege to be so deeply involved in the scientific activities of the EAN and to work closely with an amazing community of people who are so dedicated to the advancement of neurology. One of the strongest threads within that community is the EAN’s group of Scientific Panels, which are often referred to as the organisation’s ‘scientific backbone’. The panels have a hand in everything the EAN does from a scientific point of view, including coordinating clinical research, disseminating good practice, assisting in planning the EAN annual congress, supporting the EAN’s educational efforts, and producing guidelines that assist neurologists in daily practice. All of this work requires a considerable amount of oversight, and this is why each panel is run by its own Management Group, elected by the panel members. Being a part of one of these Management Groups (PDF) is an opportunity to play a direct part in determining the direction of scientific progress within Europe, and I am excited to say that the call for applications to stand for election will be announced in September. All panel members and EAN individual members are eligible to apply to be candidates, with the vote being held among the existing panel members in autumn. I would like to urge every neurologist with a passion for the scientific future of their special area of interest to consider standing for election to the relevant Management Group and to look out for the call for applications later this month. I can tell you from personal experience that fulfilling a role such as this within the structure of the EAN is a fascinating and extremely rewarding experience. The chance to take on such a unique leadership position should not be missed! The most satisfying aspect of being involved in the EAN’s organisational structure is surely seeing all the hard work and planning come to fruition when a small idea evolves into a newly launched project. One such example is the 1st EAN Science School, taking place in Salzburg next March. The idea of the Science School is to offer early career neurologists with an interest in translational research a new avenue for learning about basic pathomechanisms of neurological disorders. Application for this very first edition, on ‘Pathophysiology of disorders of the nervous system’, closed last week and we have been delighted with the level of interest. It was a pleasure to be part of the task force in charge of planning this new project and I look forward to seeing it officially transferred to the hands of the Scientific Committee after a successful event and evaluation in spring. Of our ongoing activities, one of the most significant is the EAN Neuro-covid Registry, which aims to collate epidemiological data on neurological manifestations in patients with COVID-19 infection reported by neurologists in outpatient services, emergency rooms, and hospital departments. We currently have 1,542 patients entered in the database, from 35 centres across 23 countries. So far, 29 patients have been followed for 12 months and 387 have completed the 6-months follow up. This is a decent start, but I would like to strongly encourage EAN members and their institutions to get involved and contribute cases to what will become an invaluable resource for neurologists and clinicians to improve care for Covid-19 patients. Finally, I would like share a word on a forthcoming collaboration between EAN and the Human Brain Project in December, that I think will interest a lot of EAN members. The EAN-EBRAINS joint workshop on ‘The future of medical data sharing in clinical neurosciences’ will be a three-day virtual event that aims to discuss issues and challenges associated with data sharing in Europe, from ethics to data safety and privacy, including those specific to data federation, such as the development and validation of federated algorithms. The whole workshop is completely free of charge and registration is open until 25 November, so please check out the details and sign up! I wish you all a healthy and pleasant autumn and I look forward to updating you again. Best wishes Thomas Berger Chair of the EAN Scientific Committee

      Executive Page: EAN’s scientific activities provide opportunities to both learn and contribute

      May 1, 2023

      Executive Page

      Executive Page: EAN on a Mission to advocate for brain health & neurology in 2023

      April 11, 2023

      Executive Page Head and shoulders portrait photo of Irena Rektorova, in colourful dress

      Executive Page: Leadership, mentorship and many more EAN educational opportunities

      March 13, 2023

      Paper of the Month

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      Paper of the Month One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      Paper of the Month

      One hot topic, one expert, three questions: Kristian Steen Frederiksen on our May 2023 Paper of the Month

      May 16, 2023

      Paper of the Month

      Research Paper of the Month: Tau-targeting antisense oligonucleotide MAPTRx in mild Alzheimer’s disease

      May 1, 2023

      EAN News

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      EAN News

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      EAN News One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      EAN News

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      EAN Congress news

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      EAN Congress news

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      EAN Congress news

      On sex and gender: the exciting new world of gender neurology at EAN 2023

      May 25, 2023

      EAN Congress news

      Join us for the movement disorders programme at EAN 2023

      May 24, 2023

      COVID-19

      COVID-19 Research Round-Up: Literature reviews – April 2023

      April 26, 2023

      COVID-19

      COVID-19 Research Round-Up: Cross-Sectional Case Control Studies – April 2023

      April 26, 2023

      COVID-19

      COVID-19 Research Round-Up: Case Series/Case Reports – April 2023

      April 26, 2023

      COVID-19

      COVID-19 Research Round-Up: Literature reviews – March 2023

      March 16, 2023

      Interviews

      Video Interview: Dementia & Cognitive Disorders Panel Co-Chairs

      September 8, 2022

      Interviews

      Video Interview: Sleep-Wake Panel Co-Chair, Dr. Evelina Pajediene

      July 28, 2022

      Interviews

      Video: EAN supports World Brain Day

      July 19, 2022

      Interviews

      Video Interview: European Journal of Neurology Award winner, Dr. Jonathan Coutinho

      July 18, 2022

  • Academic/Scientific
    • All Breaking news Neurology updates Scientific committee reports Scientific panels reports Eur J Neurol Top 10 Articles Scientific Corner
      Paper of the Month

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      Paper of the Month One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      EAN News

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      Paper of the Month

      One hot topic, one expert, three questions: Kristian Steen Frederiksen on our May 2023 Paper of the Month

      May 16, 2023

      Breaking news

      COVID-19 Breaking News: Meta-analyses/systematic reviews – November 2022

      November 8, 2022

      Breaking news

      COVID-19 Breaking News: Cross-Sectional Case Control Studies – November 2022

      November 8, 2022

      Breaking news

      COVID-19 Breaking News: Miscellaneous – November 2022

      November 7, 2022

      Breaking news

      COVID-19 Breaking News: Observational Studies – Prospective Longitudinal Cohort – November 2022

      November 7, 2022

      Neurology updates

      Performance of the 2017 and 2010 Revised McDonald Criteria in Predicting MS Diagnosis After a Clinically Isolated Syndrome – A MAGNIMS Study

      September 26, 2022

      Neurology updates

      Relapse-independent disability worsening plays a relevant role in every disease phase of MS

      September 26, 2022

      Neurology updates

      Epstein-Barr virus infection is a major risk factor for the development of multiple sclerosis

      September 26, 2022

      Neurology updates

      Glymphatic system impairment may contribute to multiple sclerosis pathology

      September 23, 2022

      Scientific committee reports

      Scientific Committee Snapshot: Didier Leys

      April 1, 2020

      Scientific committee reports

      Scientific Committee Snapshot: Rigmor Hojland

      February 26, 2020

      Scientific committee reports

      Scientific Committee Snapshot: Christian Enzinger

      December 1, 2019

      Scientific committee reports

      Scientific Committee Snapshot: Maurizio Leone

      November 1, 2019

      Scientific panels reports

      Highlights from the World Muscle Society annual meeting, chosen by the Scientific Panel on Muscle and NMJ Disorders

      November 2, 2022

      Scientific panels reports

      Coma and DOC Panel Update (May-June): news from the EAN Virtual Congress, personalized pain assessment, NIRS-EEG and machine learning to predict outcomes, prevalence of swallowing disorders and new multimodal predictive algorithms.

      August 11, 2020

      Scientific panels reports

      Statement of the EAN Sleep-Wake-Panel

      June 3, 2020

      Scientific panels reports

      Rare Neurological Diseases in the COVID-19 era: Suggestions for information to patients and caregivers

      May 13, 2020

      Eur J Neurol

      Video Interview: European Journal of Neurology Award winner, Dr. Jonathan Coutinho

      July 18, 2022

      Eur J Neurol

      EAN NeuroCOVID-19 Task Force position paper on COVID-19 vaccination hesitancy among people with chronic neurological disorders

      May 2, 2022

      Eur J Neurol

      European Journal of Neurology welcomes new associate editors

      December 13, 2021

      Eur J Neurol

      New European guideline and expert statements on the management of narcolepsy in adults and children

      June 30, 2021

      Top 10 Articles

      EAN is proud to announce the 2020 Virtual Master Classes Christmas Special

      November 13, 2020

      Top 10 Articles

      EUROPEAN JOURNAL OF NEUROLOGY – TOP 15 ARTICLES 2018

      February 1, 2019

      Top 10 Articles

      Interview with Prof. Patrick Cras – UEMS Section of Neurology (SN)

      February 3, 2018

      Top 10 Articles

      Interview with Mr. Bertrand Daval and Mrs. Nathalie Paulus

      February 3, 2018

      Scientific Corner graphic of a block staircase with text announcing the application deadline to the EAN's new Cost-Conscious Healthcare (CoCoCare) programme

      Training for the Future of European Guidelines: Cost-Conscious Healthcare 2023

      March 2, 2023

      Scientific Corner

      Join the EAN Guideline Workshop on 24 June!

      May 13, 2022

      Scientific Corner

      First EAN Science School proves a hit in Salzburg

      April 1, 2022

      Scientific Corner

      Invitation to the EAN-EBRAINS Joint Workshop on ‘The Future of Medical Data Sharing in Clinical Neurosciences’

      July 2, 2021

  • Educational
    • All eLearning Student Corner E-Brain Grand Rounds Resident and Research Fellows Fellowship reports Education corner
      Student Corner Photo of a sheet of paper, pencil and crumpled paper on a desk.

      EAN 2023 ‘Why Neurology?’ essay contest winners

      May 24, 2023

      Resident and Research Fellows

      Activities for RRFS Members at EAN 2023

      May 4, 2023

      Resident and Research Fellows

      Clinical Fellowship Reports 2022: Copenhagen & Dresden

      May 4, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire de Lyon, France

      May 4, 2023

      eLearning

      Brush up on your neuroimaging knowledge on the eanCampus!

      April 13, 2023

      eLearning

      Keep your mind sharp with free content on Brain Health through the eanCampus!

      March 13, 2023

      eLearning Illustration of two people holding an award between them and jumping in the air in a celebratory pose

      Learn with the eanCampus and win free EAN congress registration!

      January 12, 2023

      eLearning

      Kick off 2023 with highlights on the eanCampus

      January 10, 2023

      Student Corner Photo of a sheet of paper, pencil and crumpled paper on a desk.

      EAN 2023 ‘Why Neurology?’ essay contest winners

      May 24, 2023

      Student Corner Photo of a sheet of paper, pencil and crumpled paper on a desk.

      Win a travel grant for a future EAN congress with our ‘Why Neurology?’ student essay competition!

      March 10, 2023

      Student Corner Illustration of a vertical pencil point on a blue background, with a yellow light bulb above it

      Students’ Corner: What is it like to be a student on a neurology placement?

      March 10, 2023

      Student Corner

      Application for the Student Teaser Fellowship 2023 NOW OPEN

      February 1, 2023

      E-Brain

      ebrain May update: new website and podcast series

      May 1, 2021

      E-Brain

      EBRA launches 3rd call for clusters

      May 1, 2020

      E-Brain

      News from ebrain

      February 28, 2020

      E-Brain

      ebrain to host the 2019 Neurology Formative Test Questions, from 15 April to 26 May

      April 1, 2019

      Grand Rounds

      eBrain: virtual case report from Belgium

      October 2, 2017

      Grand Rounds

      Free access to Ebrain for EAN members

      July 1, 2016

      Grand Rounds

      Ebrain granted Royal College of Physicians (UK) CPD/CME accreditation

      July 1, 2016

      Grand Rounds

      ebrain session of the month: neuromuscular junction

      February 1, 2016

      Resident and Research Fellows

      Activities for RRFS Members at EAN 2023

      May 4, 2023

      Resident and Research Fellows

      Clinical Fellowship Reports 2022: Copenhagen & Dresden

      May 4, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire de Lyon, France

      May 4, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Department of Neuropathology, Amsterdam UMC

      May 4, 2023

      Fellowship reports

      Clinical Fellowship Reports 2022: Copenhagen & Dresden

      May 4, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire de Lyon, France

      May 4, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Department of Neuropathology, Amsterdam UMC

      May 4, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Computational Neuroscience Group, UPF Barcelona

      May 4, 2023

      Education corner

      Clinical Fellowship Reports 2022: Copenhagen & Dresden

      May 4, 2023

      Education corner

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire de Lyon, France

      May 4, 2023

      Education corner

      Research Fellowship Report 2022 – Department of Neuropathology, Amsterdam UMC

      May 4, 2023

      Education corner

      Research Fellowship Report 2022 – Computational Neuroscience Group, UPF Barcelona

      May 4, 2023

  • Other News
    • All EAN Staff Grant opportunities News from EAN member societies EBC EFNA News in general Patients societies reports Surveys Forum
      EAN Staff

      EAN Head Office Profiles: Kristián & Anna

      May 2, 2023

      EAN Staff

      EAN Head Office Profiles: Antonia & Farah

      April 12, 2023

      Other News

      Alzheimer Europe supports the rights and dignity of people with dementia with three new publications

      April 10, 2023

      Other News

      Alzheimer Europe lunch debate focuses on dealing with behavioural and psychological symptoms in dementia care

      April 7, 2023

      EAN Staff

      EAN Head Office Profiles: Kristián & Anna

      May 2, 2023

      EAN Staff

      EAN Head Office Profiles: Antonia & Farah

      April 12, 2023

      EAN Staff Chest-height portrait photo of a woman,

      Never say never – or my 8,752 days with neurologists

      March 20, 2023

      EAN Staff Composite image consisting of two chest-height portraits side-by-side

      EAN Head Office Profiles: Abigail & Bernadette

      March 15, 2023

      Grant opportunities

      1st EAN Science School, 26-29 March 2022: “Pathophysiology of disorders of the nervous system”

      June 18, 2021

      Grant opportunities

      European Commission: Innovation and novelty in medical devices and in vitro diagnostic devices; towards common concepts of innovation-related risk assessments

      November 1, 2019

      Grant opportunities

      GBS|CIDP Foundation International 2020 Research Grant Opportunity

      October 29, 2019

      Grant opportunities

      The Clinical Fellowship application deadline is approaching

      October 1, 2019

      News from EAN member societies Black image titled "In Memoriam" in remembrance of the neurologists lost in the earthquake on 6 February 2023.

      Earthquake in Türkiye and Syria: Statement from President of Turkish Neurological Society

      February 20, 2023

      News from EAN member societies

      14 June: Special publication celebrates 10 years of the European Working Group of People with Dementia

      August 2, 2022

      News from EAN member societies

      14 June: Alzheimer Europe hosts European Parliament Lunch Debate examining EU and WHO policies on neurological conditions

      August 2, 2022

      News from EAN member societies

      22 June: Alzheimer Europe invites applications for its new Anti-Stigma Award

      August 2, 2022

      EBC

      EBC & EFPIA launch RETHINKING Alzheimer’s disease White Paper

      March 22, 2023

      EBC

      Registration and call for abstracts launched for 2023 Brain Innovation Days

      March 21, 2023

      EBC

      Connecting brains for the future: Brain Innovation Days 2022

      November 23, 2022

      EBC

      Final programme available for Brain Innovation Days – Register now!

      September 22, 2022

      EFNA

      OneNeurology European Summit underlines urgent need to prioritise neurology and drive change

      December 31, 2021

      EFNA

      EFNA launch eLearning Platform for neurology advocates

      February 1, 2021

      EFNA

      ‘Me and My Brain’ – Art Competition winners announced!

      February 1, 2021

      EFNA

      Survey on the impact of COVID-19 on neurology service delivery

      November 1, 2020

      News in general

      Registration now open for the launch event of the RETHINKING Alzheimer’s disease White Paper

      December 24, 2022

      News in general

      EAN lecture at the International Neuro-Urology Society annual congress 2022

      May 25, 2022

      News in general

      EPA-EAN Joint Symposium: ‘Etiology and Treatment of the Long Covid-19 Syndrome’ and other highlights at the 30th European Congress of Psychiatry

      May 25, 2022

      News in general

      Organise an EAN-Day or EAN Regional Teaching Course in your Country!

      May 17, 2022

      Patients societies reports

      News from Alzheimer Europe

      March 2, 2020

      Patients societies reports

      News from the WHO

      January 9, 2020

      Patients societies reports

      News from EFIC and the European Pain Forum

      January 3, 2020

      Patients societies reports

      News from EFIC and the European Pain Forum

      January 2, 2020

      Surveys

      COVID-19 and neurology: a survey of previous and continued restrictions on clinical practice, professional education and neuroeconomics

      March 3, 2023

      Surveys

      Help EAN contribute towards the development of a European Pain Research strategy

      December 5, 2022

      Surveys

      Survey: management of covert brain infarction

      October 29, 2021

      Surveys

      Driving with an intracranial tumor

      July 13, 2020

      Forum

      Call for Applications: e-Learning Platform Editor-in-Chief

      August 4, 2020

      Forum

      Neurological News from Denmark VI – the land of the 2nd EAN congress 2016: Pain Research in Denmark from a neurological perspective

      April 1, 2016

      Forum

      Neurological News from Denmark V – the land of the 2nd EAN congress 2016: Clinical Dementia Research in Denmark

      March 1, 2016

      Forum

      Updated recommendations to minimise the risk of the rare brain infection PML with Tysabri – Comment to EMA recommendation

      March 1, 2016

  • EAN
  • Congress 2023
  • EANpages
  • EAN Campus
  • Eur J Neurol
  • Virtual Congress

eanpages

  • General interest
    • All Executive Page Paper of the Month EAN News EAN Congress news COVID-19 Interviews
      Executive Page

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      Paper of the Month

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      Paper of the Month One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      EAN News

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      Executive Page

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      Executive Page Dear EAN members, dear friends, It is my pleasure to give you an update on behalf of the EAN Scientific Committee following a busy year since my appointment as chair. It has been a privilege to be so deeply involved in the scientific activities of the EAN and to work closely with an amazing community of people who are so dedicated to the advancement of neurology. One of the strongest threads within that community is the EAN’s group of Scientific Panels, which are often referred to as the organisation’s ‘scientific backbone’. The panels have a hand in everything the EAN does from a scientific point of view, including coordinating clinical research, disseminating good practice, assisting in planning the EAN annual congress, supporting the EAN’s educational efforts, and producing guidelines that assist neurologists in daily practice. All of this work requires a considerable amount of oversight, and this is why each panel is run by its own Management Group, elected by the panel members. Being a part of one of these Management Groups (PDF) is an opportunity to play a direct part in determining the direction of scientific progress within Europe, and I am excited to say that the call for applications to stand for election will be announced in September. All panel members and EAN individual members are eligible to apply to be candidates, with the vote being held among the existing panel members in autumn. I would like to urge every neurologist with a passion for the scientific future of their special area of interest to consider standing for election to the relevant Management Group and to look out for the call for applications later this month. I can tell you from personal experience that fulfilling a role such as this within the structure of the EAN is a fascinating and extremely rewarding experience. The chance to take on such a unique leadership position should not be missed! The most satisfying aspect of being involved in the EAN’s organisational structure is surely seeing all the hard work and planning come to fruition when a small idea evolves into a newly launched project. One such example is the 1st EAN Science School, taking place in Salzburg next March. The idea of the Science School is to offer early career neurologists with an interest in translational research a new avenue for learning about basic pathomechanisms of neurological disorders. Application for this very first edition, on ‘Pathophysiology of disorders of the nervous system’, closed last week and we have been delighted with the level of interest. It was a pleasure to be part of the task force in charge of planning this new project and I look forward to seeing it officially transferred to the hands of the Scientific Committee after a successful event and evaluation in spring. Of our ongoing activities, one of the most significant is the EAN Neuro-covid Registry, which aims to collate epidemiological data on neurological manifestations in patients with COVID-19 infection reported by neurologists in outpatient services, emergency rooms, and hospital departments. We currently have 1,542 patients entered in the database, from 35 centres across 23 countries. So far, 29 patients have been followed for 12 months and 387 have completed the 6-months follow up. This is a decent start, but I would like to strongly encourage EAN members and their institutions to get involved and contribute cases to what will become an invaluable resource for neurologists and clinicians to improve care for Covid-19 patients. Finally, I would like share a word on a forthcoming collaboration between EAN and the Human Brain Project in December, that I think will interest a lot of EAN members. The EAN-EBRAINS joint workshop on ‘The future of medical data sharing in clinical neurosciences’ will be a three-day virtual event that aims to discuss issues and challenges associated with data sharing in Europe, from ethics to data safety and privacy, including those specific to data federation, such as the development and validation of federated algorithms. The whole workshop is completely free of charge and registration is open until 25 November, so please check out the details and sign up! I wish you all a healthy and pleasant autumn and I look forward to updating you again. Best wishes Thomas Berger Chair of the EAN Scientific Committee

      Executive Page: EAN’s scientific activities provide opportunities to both learn and contribute

      May 1, 2023

      Executive Page

      Executive Page: EAN on a Mission to advocate for brain health & neurology in 2023

      April 11, 2023

      Executive Page Head and shoulders portrait photo of Irena Rektorova, in colourful dress

      Executive Page: Leadership, mentorship and many more EAN educational opportunities

      March 13, 2023

      Paper of the Month

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      Paper of the Month One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      Paper of the Month

      One hot topic, one expert, three questions: Kristian Steen Frederiksen on our May 2023 Paper of the Month

      May 16, 2023

      Paper of the Month

      Research Paper of the Month: Tau-targeting antisense oligonucleotide MAPTRx in mild Alzheimer’s disease

      May 1, 2023

      EAN News

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      EAN News

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      EAN News One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      EAN News

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      EAN Congress news

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      EAN Congress news

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      EAN Congress news

      On sex and gender: the exciting new world of gender neurology at EAN 2023

      May 25, 2023

      EAN Congress news

      Join us for the movement disorders programme at EAN 2023

      May 24, 2023

      COVID-19

      COVID-19 Research Round-Up: Literature reviews – April 2023

      April 26, 2023

      COVID-19

      COVID-19 Research Round-Up: Cross-Sectional Case Control Studies – April 2023

      April 26, 2023

      COVID-19

      COVID-19 Research Round-Up: Case Series/Case Reports – April 2023

      April 26, 2023

      COVID-19

      COVID-19 Research Round-Up: Literature reviews – March 2023

      March 16, 2023

      Interviews

      Video Interview: Dementia & Cognitive Disorders Panel Co-Chairs

      September 8, 2022

      Interviews

      Video Interview: Sleep-Wake Panel Co-Chair, Dr. Evelina Pajediene

      July 28, 2022

      Interviews

      Video: EAN supports World Brain Day

      July 19, 2022

      Interviews

      Video Interview: European Journal of Neurology Award winner, Dr. Jonathan Coutinho

      July 18, 2022

  • Academic/Scientific
    • All Breaking news Neurology updates Scientific committee reports Scientific panels reports Eur J Neurol Top 10 Articles Scientific Corner
      Paper of the Month

      Research Papers of the Month: Safety and efficacy of rozanolixizumab/zilucoplan in patients with generalised myasthenia gravis (MycarinG and RAISE)

      June 1, 2023

      Paper of the Month One glowing light bulb that stands out from unlit or dim lamps on a blue background

      Research Highlights of the Month – June 2023

      June 1, 2023

      EAN News

      Take our EAN Survey on General Neurology for a chance to win free registration and accommodation for EAN 2024!

      May 25, 2023

      Paper of the Month

      One hot topic, one expert, three questions: Kristian Steen Frederiksen on our May 2023 Paper of the Month

      May 16, 2023

      Breaking news

      COVID-19 Breaking News: Meta-analyses/systematic reviews – November 2022

      November 8, 2022

      Breaking news

      COVID-19 Breaking News: Cross-Sectional Case Control Studies – November 2022

      November 8, 2022

      Breaking news

      COVID-19 Breaking News: Miscellaneous – November 2022

      November 7, 2022

      Breaking news

      COVID-19 Breaking News: Observational Studies – Prospective Longitudinal Cohort – November 2022

      November 7, 2022

      Neurology updates

      Performance of the 2017 and 2010 Revised McDonald Criteria in Predicting MS Diagnosis After a Clinically Isolated Syndrome – A MAGNIMS Study

      September 26, 2022

      Neurology updates

      Relapse-independent disability worsening plays a relevant role in every disease phase of MS

      September 26, 2022

      Neurology updates

      Epstein-Barr virus infection is a major risk factor for the development of multiple sclerosis

      September 26, 2022

      Neurology updates

      Glymphatic system impairment may contribute to multiple sclerosis pathology

      September 23, 2022

      Scientific committee reports

      Scientific Committee Snapshot: Didier Leys

      April 1, 2020

      Scientific committee reports

      Scientific Committee Snapshot: Rigmor Hojland

      February 26, 2020

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General interestInterviewsTop Articles

Interview with Holm Graessner, Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND)

May 3, 2019

 

Professor Dafin Muresanu, Chair of the EAN Communication Committee, interviews

 

 

 

 

 

Holm Graessner, Coordinator for the European Reference Network for Rare Neurological Diseases (ERN-RND)

 

 

 

 

 

Dafin Muresanu (DM): Dear Dr. Graessner, thank you for accepting this interview. Can you please explain to the readers of the EAN Pages how the ERN-RND was established and what the role of the EU towards this initiative has been.

Holm Graessner (HG): Around 30 million people are affected by rare or complex diseases in the European Union, more than 500,000 of those suffer from a rare neurological disease and those numbers keep on increasing. By definition, in Europe a rare disease is one that affects less than 1 in 2000 people. And, rare means that knowledge of those diseases is scarce. This is why, there was an urgent need for European countries to pool resources, in other words, for healthcare professionals and researchers across Europe to collaborate and exchange their expert knowledge in order to help find accurate diagnosis and treatments for patients with rare diseases.

In practice, 24 European Reference Networks (ERNs) officially started their activities on March 2017 involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 member states. As a consequence, the European Reference Network for Rare Neurological Diseases (ERN-RND) was established. It now gathers 31 partners hospitals from 13 European countries and we will be expanding in the future. Our members include clinicians, researchers and patients. We currently cover the following disease groups: cerebellar ataxias and hereditary spastic paraplegias, choreas & huntington’s disease, dystonias/paroxysmal disorders/neurodegeneration with brain iron accumulation, leukodystrophies, frontotemporal dementia and atypical parkinsonian syndromes.
As to the role of the EU in this initiative, it has performed the assessment of the networks and the healthcare sites, provided funding for European Reference Networks to operate and a reporting structure to run activities efficiently over time. It also encouraged national governments to join this action. Part of our expectations for the future is that ERNs will be integrated into national healthcare systems.

 

DM: The ERN-RND aims at supporting patients and families affected by rare neurological diseases and to bridge the gap towards better and earlier diagnosis of these diseases. Can you tell us how the ERN-RND works towards these important goals?

HG: The ERN-RND continuously strives to support people affected by rare neurological diseases find the right diagnosis as early as possible as well as receiving the best treatment and care. Our work to achieve this is based on three important pillars: the Clinical Patient Management System (CPMS), knowledge generation and sharing and our European expert centres.
First of all, the CPMS is an online secure platform our clinicians across Europe use to discuss patient cases allowing the flow information to travel without having the patient move from the comfort of their home. Multidisciplinary panels of experts are convened in order to provide holistic advice. Moving on to our second pillar, members of the ERN-RND work together to produce knowledge in an effort to support clinicians in finding diagnosis and treatments  in addition to helping patients and their families find the information they need and understand their clinical condition. To this end, ERN-RND has for example developed and consented on RND diagnostic flowcharts which can be found on ERN-RND.eu. Finally, ERN-RND is made up of healthcare centres which have been carefully selected and are experts in the different rare neurological disease groups we cover.

DM: It is clear that this work cannot be addressed without the input of families and patient organisations. What is their role in the work of the ERN-RND?

HG: The input of patients and their families is crucial in what we do. This is why the ERN-RND works with 8 European Patient Advocacy Groups (ePAGs) patient representatives who are each affiliated to one organisation and are members of the network: Euro-ataxia, Friedreich’s Ataxia Research Alliance Ireland (FARA), European Network for Research on Alternating Hemiplegia (ENRAH), European Huntington Association, Euro-HSP, Rare Dementia Support, the Czech Association of Atypical Parkinsonian Syndromes and Dystonia Europe. This collaboration ensures that the voice of the patient is being heard and that their views are taken into consideration when developing guidelines, diagnostic knowledge, standards, for example. They are always part of the different ERN-RND working groups so that the decisions we take as a network and the knowledge we develop are patient-centered.

DM: We are very pleased that an MoU with ERN-RND was signed. What do you expect form this cooperation?
HG: ERN-RND is delighted to be collaborating with the EAN! I hope that this partnership will support our work in raising awareness of rare neurological diseases across Europe among patients, their families and the clinical as well as the research communities. This is key.  In addition to this, I expect it to foster our network’s efforts in educating neurologists in this rare field and to boost rare neurological disease research. One of the core principles of European Reference Networks is collaborative work, we can only achieve our goals by joining forces.

DM: Dear Prof. Graessner thank you very much for this enlightening interview! I wish you the very best for your work with the ERN-RND and look forward to our cooperation.

 

 

 

Interview with Holm Graessner, Coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND) was last modified: May 3rd, 2019 by Editor
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