eanpages
  • General interest
    • All Executive Page EAN News EAN Congress news Interviews
      Executive Page

      Executive Page: Advocacy for brain health gaining momentum across the neurological landscape

      October 1, 2023

      EAN News

      EAN Contributes to Global Brain Health Agenda at UNGA78 with Leadership Presence

      September 28, 2023

      EAN News

      Earthquake in Morocco – EAN Statement

      September 11, 2023

      EAN News

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      Executive Page

      Executive Page: Advocacy for brain health gaining momentum across the neurological landscape

      October 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: Management Group elections are coming – run for office and help shape our future!

      September 1, 2023

      Executive Page

      Executive Page: Thank you for making the EAN Congress 2023 a great success!

      July 24, 2023

      Executive Page

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      EAN News

      Executive Page: Advocacy for brain health gaining momentum across the neurological landscape

      October 1, 2023

      EAN News

      EAN Contributes to Global Brain Health Agenda at UNGA78 with Leadership Presence

      September 28, 2023

      EAN News

      Earthquake in Morocco – EAN Statement

      September 11, 2023

      EAN News

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      EAN Congress news

      African Academy of Neurology features in Special Studio Session at EAN 2023

      July 25, 2023

      EAN Congress news

      Find photos, facts, figures and reports in our EAN Congress Review

      July 24, 2023

      EAN Congress news

      Executive Page: Thank you for making the EAN Congress 2023 a great success!

      July 24, 2023

      EAN Congress news

      Special Session on Guidelines at the EAN Congress: Meet the new EAN Guidelines

      July 21, 2023

      Interviews

      Video Interview: Prof. Mary Reilly, Moritz Romberg lecturer at EAN 2023

      July 4, 2023

      Interviews

      Video Interview: Mark Hallett, C. Brown-Séquard lecturer at EAN 2023

      July 3, 2023

      Interviews

      Video Interview: Josep Dalmau, Camillo Golgi Lecturer at EAN 2023

      July 2, 2023

      Interviews

      Video Interview: Dementia & Cognitive Disorders Panel Co-Chairs

      September 8, 2022

  • Academic/Scientific
    • All Paper of the Month Neurology updates COVID-19 Eur J Neurol Scientific Corner
      Academic/Scientific

      Open Call: EMA seeks new data partners for DARWIN EU – deadline 31 October

      September 29, 2023

      EAN News

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      EAN News

      European Journal of Neurology to be fully open access from January 1 2024

      September 7, 2023

      Paper of the Month

      Research Paper of the Month: Soluble Nogo-Receptor-Fc decoy (AXER-204) in patients with chronic cervical spinal cord injury in the USA

      September 1, 2023

      Paper of the Month

      Research Paper of the Month: Soluble Nogo-Receptor-Fc decoy (AXER-204) in patients with chronic cervical spinal cord injury in the USA

      September 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 – September 2023

      September 1, 2023

      Paper of the Month

      Research Paper of the Month: Vorasidenib in IDH1- or IDH2-Mutant Low-Grade Glioma

      July 24, 2023

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

      Research Highlight of the Month – July 2023

      July 24, 2023

      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

      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

      Eur J Neurol

      European Journal of Neurology to be fully open access from January 1 2024

      September 7, 2023

      Eur J Neurol

      Reasons to publish open access with European Journal of Neurology

      August 24, 2023

      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

      Scientific Corner

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      Scientific Corner

      Special Session on Guidelines at the EAN Congress: Meet the new EAN Guidelines

      July 21, 2023

      Scientific Corner

      EAN Guideline Education and Cost-Conscious Healthcare (CoCoCare) kick-off workshop in Budapest 2023

      July 21, 2023

      Scientific Corner

      EAN Guidelines Workshop 2023: From questions to recommendations

      July 21, 2023

  • Educational
    • All eLearning Student Corner Resident and Research Fellows Fellowship reports Education corner
      Education corner Close up photo of a Black graduation cap and yellow tassel

      European Board Exam in Neurology – how to take it and how to help out

      September 20, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

      eLearning

      World Brain Day with the European Academy of Neurology

      July 21, 2023

      eLearning

      New eanCampus content especially for EAN 2023

      June 30, 2023

      eLearning

      eanCampus: An Award-Winning e-Learning Experience

      June 28, 2023

      eLearning

      One year of the eanCampus – An Interview with the e-Learning Editorial Board

      June 27, 2023

      Student Corner

      Student Teaser Fellowship reports 2022 – Pisa, London, & Lausanne

      September 13, 2023

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

      Student Corner: My EAN Congress experience

      September 5, 2023

      Student Corner

      Student Teaser Fellowship reports 2022 – Rotterdam, London, & Paris

      August 22, 2023

      Student Corner

      Student Teaser Fellowship winners 2023

      June 28, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

      Resident and Research Fellows

      Application deadline approaching for 2024 EAN Clinical Fellowships

      September 7, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

      Fellowship reports

      Student Teaser Fellowship reports 2022 – Pisa, London, & Lausanne

      September 13, 2023

      Education corner Close up photo of a Black graduation cap and yellow tassel

      European Board Exam in Neurology – how to take it and how to help out

      September 20, 2023

      Education corner

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Education corner

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Education corner

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

  • Other News
    • All EAN Staff EBC News in general Surveys
      EAN Staff

      EAN Head Office Profiles: Kathrin & Sasha

      August 28, 2023

      General interest

      WHO’s Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP) published in all six UN languages

      August 3, 2023

      EAN Staff Anja Sander receiving flowers at the end of EAN Congress 2023

      Celebrating 20 Years of Excellence: Anja Sander, EAN’s Executive Director!

      August 3, 2023

      EAN News

      WHO recognises the public health need for effective and affordable treatments for multiple sclerosis

      August 3, 2023

      EAN Staff

      EAN Head Office Profiles: Kathrin & Sasha

      August 28, 2023

      EAN Staff Anja Sander receiving flowers at the end of EAN Congress 2023

      Celebrating 20 Years of Excellence: Anja Sander, EAN’s Executive Director!

      August 3, 2023

      EAN Staff

      EAN Head Office Profiles: Dauren & Benita

      June 5, 2023

      EAN Staff

      EAN Head Office Profiles: Kristián & Anna

      May 2, 2023

      EBC

      Brain Innovation Days: Discover the early programme and register today!

      July 21, 2023

      EBC

      Join the community’s calls for a European Brain Research and Innovation Plan

      July 21, 2023

      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

      News in general

      WHO’s Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP) published in all six UN languages

      August 3, 2023

      News in general

      WHO recognises the public health need for effective and affordable treatments for multiple sclerosis

      August 3, 2023

      News in general

      Brain Innovation Days: Discover the early programme and register today!

      July 21, 2023

      News in general

      Join the community’s calls for a European Brain Research and Innovation Plan

      July 21, 2023

      Surveys

      Neurorehabilitation Across Europe after Ischemic and Traumatic Brain Injuries: a survey to increase knowledge on brain-injury-specific neurorehabilitation

      July 14, 2023

      Surveys

      ILAE survey on genetic testing in the epilepsies

      July 14, 2023

      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

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

eanpages

  • General interest
    • All Executive Page EAN News EAN Congress news Interviews
      Executive Page

      Executive Page: Advocacy for brain health gaining momentum across the neurological landscape

      October 1, 2023

      EAN News

      EAN Contributes to Global Brain Health Agenda at UNGA78 with Leadership Presence

      September 28, 2023

      EAN News

      Earthquake in Morocco – EAN Statement

      September 11, 2023

      EAN News

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      Executive Page

      Executive Page: Advocacy for brain health gaining momentum across the neurological landscape

      October 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: Management Group elections are coming – run for office and help shape our future!

      September 1, 2023

      Executive Page

      Executive Page: Thank you for making the EAN Congress 2023 a great success!

      July 24, 2023

      Executive Page

      Executive Page: Get ready for EAN 2023 in Budapest!

      June 1, 2023

      EAN News

      Executive Page: Advocacy for brain health gaining momentum across the neurological landscape

      October 1, 2023

      EAN News

      EAN Contributes to Global Brain Health Agenda at UNGA78 with Leadership Presence

      September 28, 2023

      EAN News

      Earthquake in Morocco – EAN Statement

      September 11, 2023

      EAN News

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      EAN Congress news

      African Academy of Neurology features in Special Studio Session at EAN 2023

      July 25, 2023

      EAN Congress news

      Find photos, facts, figures and reports in our EAN Congress Review

      July 24, 2023

      EAN Congress news

      Executive Page: Thank you for making the EAN Congress 2023 a great success!

      July 24, 2023

      EAN Congress news

      Special Session on Guidelines at the EAN Congress: Meet the new EAN Guidelines

      July 21, 2023

      Interviews

      Video Interview: Prof. Mary Reilly, Moritz Romberg lecturer at EAN 2023

      July 4, 2023

      Interviews

      Video Interview: Mark Hallett, C. Brown-Séquard lecturer at EAN 2023

      July 3, 2023

      Interviews

      Video Interview: Josep Dalmau, Camillo Golgi Lecturer at EAN 2023

      July 2, 2023

      Interviews

      Video Interview: Dementia & Cognitive Disorders Panel Co-Chairs

      September 8, 2022

  • Academic/Scientific
    • All Paper of the Month Neurology updates COVID-19 Eur J Neurol Scientific Corner
      Academic/Scientific

      Open Call: EMA seeks new data partners for DARWIN EU – deadline 31 October

      September 29, 2023

      EAN News

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      EAN News

      European Journal of Neurology to be fully open access from January 1 2024

      September 7, 2023

      Paper of the Month

      Research Paper of the Month: Soluble Nogo-Receptor-Fc decoy (AXER-204) in patients with chronic cervical spinal cord injury in the USA

      September 1, 2023

      Paper of the Month

      Research Paper of the Month: Soluble Nogo-Receptor-Fc decoy (AXER-204) in patients with chronic cervical spinal cord injury in the USA

      September 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 – September 2023

      September 1, 2023

      Paper of the Month

      Research Paper of the Month: Vorasidenib in IDH1- or IDH2-Mutant Low-Grade Glioma

      July 24, 2023

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

      Research Highlight of the Month – July 2023

      July 24, 2023

      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

      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

      Eur J Neurol

      European Journal of Neurology to be fully open access from January 1 2024

      September 7, 2023

      Eur J Neurol

      Reasons to publish open access with European Journal of Neurology

      August 24, 2023

      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

      Scientific Corner

      New EAN Coordinating Panel on Functional Neurological Disorders – Call for Applications

      September 7, 2023

      Scientific Corner

      Special Session on Guidelines at the EAN Congress: Meet the new EAN Guidelines

      July 21, 2023

      Scientific Corner

      EAN Guideline Education and Cost-Conscious Healthcare (CoCoCare) kick-off workshop in Budapest 2023

      July 21, 2023

      Scientific Corner

      EAN Guidelines Workshop 2023: From questions to recommendations

      July 21, 2023

  • Educational
    • All eLearning Student Corner Resident and Research Fellows Fellowship reports Education corner
      Education corner Close up photo of a Black graduation cap and yellow tassel

      European Board Exam in Neurology – how to take it and how to help out

      September 20, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

      eLearning

      World Brain Day with the European Academy of Neurology

      July 21, 2023

      eLearning

      New eanCampus content especially for EAN 2023

      June 30, 2023

      eLearning

      eanCampus: An Award-Winning e-Learning Experience

      June 28, 2023

      eLearning

      One year of the eanCampus – An Interview with the e-Learning Editorial Board

      June 27, 2023

      Student Corner

      Student Teaser Fellowship reports 2022 – Pisa, London, & Lausanne

      September 13, 2023

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

      Student Corner: My EAN Congress experience

      September 5, 2023

      Student Corner

      Student Teaser Fellowship reports 2022 – Rotterdam, London, & Paris

      August 22, 2023

      Student Corner

      Student Teaser Fellowship winners 2023

      June 28, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Resident and Research Fellows

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

      Resident and Research Fellows

      Application deadline approaching for 2024 EAN Clinical Fellowships

      September 7, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Fellowship reports

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

      Fellowship reports

      Student Teaser Fellowship reports 2022 – Pisa, London, & Lausanne

      September 13, 2023

      Education corner Close up photo of a Black graduation cap and yellow tassel

      European Board Exam in Neurology – how to take it and how to help out

      September 20, 2023

      Education corner

      Research Fellowship Report 2022 – Oxford Autoimmune Neurology Group

      September 16, 2023

      Education corner

      Research Fellowship Report 2022 – Centre Hospitalier Universitaire Vaudois, Lausanne

      September 15, 2023

      Education corner

      Research Fellowship Report 2022 – Department of Neuromuscular Diseases Institute, University College London

      September 14, 2023

  • Other News
    • All EAN Staff EBC News in general Surveys
      EAN Staff

      EAN Head Office Profiles: Kathrin & Sasha

      August 28, 2023

      General interest

      WHO’s Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP) published in all six UN languages

      August 3, 2023

      EAN Staff Anja Sander receiving flowers at the end of EAN Congress 2023

      Celebrating 20 Years of Excellence: Anja Sander, EAN’s Executive Director!

      August 3, 2023

      EAN News

      WHO recognises the public health need for effective and affordable treatments for multiple sclerosis

      August 3, 2023

      EAN Staff

      EAN Head Office Profiles: Kathrin & Sasha

      August 28, 2023

      EAN Staff Anja Sander receiving flowers at the end of EAN Congress 2023

      Celebrating 20 Years of Excellence: Anja Sander, EAN’s Executive Director!

      August 3, 2023

      EAN Staff

      EAN Head Office Profiles: Dauren & Benita

      June 5, 2023

      EAN Staff

      EAN Head Office Profiles: Kristián & Anna

      May 2, 2023

      EBC

      Brain Innovation Days: Discover the early programme and register today!

      July 21, 2023

      EBC

      Join the community’s calls for a European Brain Research and Innovation Plan

      July 21, 2023

      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

      News in general

      WHO’s Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP) published in all six UN languages

      August 3, 2023

      News in general

      WHO recognises the public health need for effective and affordable treatments for multiple sclerosis

      August 3, 2023

      News in general

      Brain Innovation Days: Discover the early programme and register today!

      July 21, 2023

      News in general

      Join the community’s calls for a European Brain Research and Innovation Plan

      July 21, 2023

      Surveys

      Neurorehabilitation Across Europe after Ischemic and Traumatic Brain Injuries: a survey to increase knowledge on brain-injury-specific neurorehabilitation

      July 14, 2023

      Surveys

      ILAE survey on genetic testing in the epilepsies

      July 14, 2023

      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

General interestInterviewsTop Articles

Interview with Prof. Segolene Aymé, Founder of Orphanet

March 1, 2018

 

Segolene Aymé
Founder and past director of Orphanet
http://www.orpha.net/consor/cgi-bin/index.php?lng=EN

 

 

Antonio Federico (AF): Dear Professor, you founded Orphanet and gave a great contribution on the development of information about Rare Diseases in Europe. Can you summarize your past activities and the difficulties you had?

Segolene Aymé (SA): That is a long story as I started to build a database of genetic diseases and of malformation syndromes described in the literature, in the mid-seventies, when I started as a clinician in medical genetics, lost in diagnosing most of the patients attending our clinic in Marseilles. With an algorithm based on belief functions, I used it to compare the patients without a diagnosis with patients described in the International literature; but there was no way to share facility outside my hospital. In the early nineties, I started another database of expert clinicians dedicated specifically to rare diseases, of expert clinical laboratories providing diagnostic tests, and of expert research teams working on rare diseases. This was to help researchers to liaise with clinicians to access large families with genetic diseases, a necessary step to map the human genome. The database was accessible through a quarterly report sent by regular mail to professionals. When Internet arrived, suddenly it became thinkable to share all these resources with the community at large. In 1996, Orphanet was born, first in French exclusively as it was the merge of the two already existing database, then in English in 2001 when a grant from the European Commission opened new opportunities, and now in seven languages. The obstacles that I faced first was the resistance of many experts to make medical information available to non-experts, especially to patients. They were afraid that patients would stop consulting them, that non-expert MD would stop referring their patients to appropriate clinics. Of course, this did not happen, as what you release is information in general, not enough applicable to specific personal situations. The second difficulty was to build a knowledge database of thousands of diseases from all medical fields. It has been very difficult to make several specialties work together. However, the main issue was to find the resources to document so many diseases at a period when the knowledge was evolving fast. During the first decade of Orphanet, we felt like we had to do everything by ourselves, as no one else was interested; but since, the interest for rare diseases grew up very quickly, so that many specialized groups started to produce excellent information packages. The focus of Orphanet shifted to the aggregation of content. An additional challenge was to impose an International nomenclature, by providing an inventory of rare diseases and classifications of these diseases, to ensure that tools are available to make interoperable datasets. We succeeded by making freely accessible our inventory and all data elements linked to it, on orphadata.org. The success was immediate, with thousands of downloads from the first month on. Since, the virtuous circle of collaboration with all stakeholders and of rigorous standing operating procedures has done the rest. Orphanet is now the International standard. What remains complicated is to sustain the budget of this infrastructure, as most grants are for short-term projects, not for long-term ones.

AF: Rare Neurologic Diseases are one of the most common conditions within the Rare Diseases. What is your feeling about the knowledge of general neurologists about rare neurologic diseases and what you suggest that EAN may do for improving it in the future?

SA: If we include the neurodevelopmental disorders into the neurology category, neurology is the third area in terms of number of rare diseases, after developmental defects (malformation syndromes) and oncology. I don’t know whether the level of ignorance of neurologists is greater or not, compared to other medical specialties, but I suppose it is similar, which means unfortunately great. This is normal, as these diseases are not taught at medical school. I suggest that the EAN produce a list of rare diseases in Neurology, using the Orphanet data, targeted to adult neurologists, and another one targeted to pediatric neurologists, and post it on its website as a PDF document. This document would also give information on the main resources: Orphanet and the ERN in neurology. It would be also useful to offer training sessions at the EAN congress. I would be happy to help developing these new services.

AF: Do you consider that all European Countries have developed the same interest on the Rare Neurologic Diseases or there are differences and if yes, what the EAN can do to promote the interest in those countries?

SA: Not all European countries have the same interest in developing solutions for rare diseases, despite all efforts to inspire the less motivated countries. The fists countries to understand that rare disease require a specific organization of the healthcare system and that patient organizations have to be involved in policy development were the Scandinavian countries, specifically Denmark and Sweden. France is the first and unique country, which adopted a national plan in 2004, covering both care provision and research, and with a significant specific budget. It is still the only country with networks of expert centers covering all rare diseases. Since, most countries, except Estonia, Malta, Luxembourg and Poland, have adopted a plan or a strategy, but not backed up by a dedicated budget. The focus is more on research in Germany, more on patient data in Italy, more on expert centers in England but only for a subset of rare diseases… What is done is very heterogeneous. At least every European country contribute to Orphanet…The differences are also major regarding access to sequencing technologies for diagnosis, and access to orphan drugs; partly because of the differences in the healthcare system organization and wealth status of the country, but also because of the level of interest for rare diseases. In neurology, the composition of the European Reference Network is uneven across countries with 25 participating centers from 14 countries only.

AF: What is the best success you obtained in your life working with rare diseases and what you were not able to obtain?

SA: I am globally proud and happy to have contributed to provide solutions to patients with genetic or rare diseases, something that I decided to achieve when I was 25. I believe I had a decisive contribution to the field through the inventory of rare diseases and the classifications attached to it, which was decisive in convincing WHO to incorporate rare diseases in the next edition of the International Classification of Diseases, ICD11. I have also decisively contributed to the definition of the French policy in the field, and of the European policy, as chair of the Rare Disease Task Force of the European Commission. I am also proud of the journal I founded, the Orphanet Journal of Rare Diseases, and of the Orphanet website, adopted by 42 countries as the way to disseminate information to professionals and patients. Rare Diseases are now under the spotlights, it is what matters. What I have not been able to put in place is a better access to patient data, although I tried hard through the European Committee of Experts on Rare Diseases of the European Union (EUCERD). By definition, data is scarce, that means precious. It is not acceptable that many datasets are not made available to third parties able to analyze them, are not shared between Academia, Patient organization, health authorities and Industry. Every registry, every cohort, should be a common good, respecting the FAIR principles: Findable, Accessible, Interoperable, Reusable. The resistance is more psychologic than technical.

AF: Do you think that the EU is moving correctly in the field and in what you would like that it will improve?

SA: The EU has done a lot already, providing that Health falls outside the Treaties. That means that the European Commission cannot do anything except organize the cooperation between European countries. In 1999, the EU adopted an orphan drug regulation, which has had a decisive effect on the development of medicinal products for rare diseases. In 2000, rare diseases became a priority area, both for research funding and for Public health funding. In 2007, a rare disease task force was established and funded, which became later the EUCERD composed of representatives of the health authorities of every European country, of patient organizations, of academic organizations, and of representatives of the EC services. This committee has produced many recommendations to drive and support the development of appropriate policies at country level. In 2012, the European Commission took the initiative to launch an International Rare Diseases Research Consortium with the NIH, the IRDiRC. It is now a well-established network of research funding agencies from many continents, pushing forward the agenda of rare diseases and convincing the community to be more collaborative than competitive.  In 2016, the European Commission opened a call to select European Reference Networks of Expert Centers. Although these ERNs were not specifically designed for rare diseases, at the end, 22 of the 23 first designated ERNs are for rare diseases. The European Union did its job; the rest has to be done at country level….

AF: Are you satisfied with the orphan drug landscape? What do you think about the prices of Orphan drugs? Is it always justified?

SA: I have very mixed feelings about the orphan drug landscape. The translation of rare disease research into product development is happening across an increasing number of diseases, thanks to the Orphan Drug regulation, and to the advancement of science in general. If Oncology remains the most common therapeutic area, it is immediately followed by neurology. Unfortunately, R&D develops in clusters, which means that very few new products are developed for a totally orphan disease. Most companies invest in areas were the R&D ecosystem is already well in place. Orphan drugs prices are higher than non-orphan drugs, and the rational for that is unclear to say the least. It is understandable that small market size induces automatically higher prices per patient, but what is seen, years after year, is a constant increase of the prices, with no clear correlation with the market size nor the complexity of the production or the length of the development phase. This is hard to justify in an area with high level of unmet needs. Moreover, this is not sustainable. The orphan drugs’ share of the total pharmaceutical market was predicted to peak from 3.3% in 2010 to 4–5% in 2020. Most health care budgets will not cope with that. We are in a very frustrating phase: science is delivering, patients are pushing and contributing, incentives are in place to support Industry, but companies still try to obtain unfair benefits. The worse would be to have to give up the development of promising products, just for financial reasons. It is time to impose transparency in the way prices are established.

Segolene Ayme, in the center, at Amsterdam EAN Congress, with (from the left) Prof. Federico, the Coordinators of the 4 Neurologic related ERNs (NMD-ERN, Segolene Ayme, Metab-ERN, Epicare ERN, RND-ERN), after the Meeting of the TF of Rare Neurologic Diseases

by Antonio Federico, Chair EAN Scientific Committee

Interview with Prof. Segolene Aymé, Founder of Orphanet was last modified: November 12th, 2018 by Editor
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