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      COVID-19

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      COVID-19

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      COVID-19

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      COVID-19

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      COVID-19

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      COVID-19

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      COVID-19

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      COVID-19

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      Executive Page

      Executive page: From Website editor to Co-Chair Communication Committee

      February 1, 2021

      Executive Page

      Severe COVID-19-related encephalitis can respond to immunotherapy

      January 5, 2021

      Executive Page

      Executive Page: Happy New Year 2021 from the EAN, the Home of Neurology

      January 4, 2021

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      Executive Page: Recap of 2020 from Secretary-General

      December 1, 2020

      Country of the Month

      Country of the Month: Albania

      December 1, 2020

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      Country of the Month: The Netherlands

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      Country of the Month: Serbia

      October 1, 2020

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      September 1, 2020

      Paper of the Month

      COVID-19 Paper of the month: Safety and Efficacy of the BNT162b2 mRNA COVID-19 Vaccine

      February 1, 2021

      Paper of the Month

      Research Paper of the month: Trial of dexamethasone for chronic subdural hematoma

      February 1, 2021

      Paper of the Month

      COVID-19 Paper of the month: Neuropathology of patients with COVID-19 in Germany: a post-mortem case series

      January 1, 2021

      Paper of the Month

      Research Paper of the month: Safety and efficacy of prednisone versus placebo in short-term prevention of episodic cluster headache: a multicentre, double-blind, randomised controlled trial

      January 1, 2021

      EAN News

      European Academy of Neurology endorses the ALBA declaration on Equity and Inclusion

      January 25, 2021

      EAN News

      The First EAN Virtual Master Classes 2020 – Report

      January 1, 2021

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      Welcome to new year by Editor-in-Chief

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      Congress Registration is open

      December 15, 2020

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      Congress Registration is open

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      December 15, 2020

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      EAN announces Virtual Congress in 2021

      December 1, 2020

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      September 14, 2020

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      COVID-19 around the World: Clinician interviews on experience and impact of the virus (South Africa)

      February 5, 2021

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      COVID-19 around the World: Clinician interviews on experience and impact of the virus (Japan)

      February 1, 2021

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      Interview with Professor Andrea Winkler

      February 1, 2021

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      Interview of the Month with Prof. Maged Abdel Naseer

      February 1, 2021

  • Academic/Scientific
    • All Scientific committee reports Scientific panels reports Breaking news Neurology updates Eur J Neurol Top 10 Articles Scientific Corner
      COVID-19

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      COVID-19

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      COVID-19

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      COVID-19

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      Scientific committee reports

      Scientific Committee Snapshot: Didier Leys

      April 1, 2020

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      Scientific Committee Snapshot: Rigmor Hojland

      February 26, 2020

      Scientific committee reports

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      December 1, 2019

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      November 1, 2019

      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

      Scientific panels reports

      Scentific Panel of the Month: Higher Cortical Functions

      March 2, 2020

      Breaking news

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      Breaking news

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      Breaking news

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      Breaking news

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      Neurology updates

      Neurology Update: Dementia and Cognitive Disorders

      February 18, 2021

      Neurology updates

      Neurology Update: Dementia and Cognitive Disorders

      February 18, 2021

      Neurology updates

      Neurology Update: Dementia and Cognitive Disorders

      February 18, 2021

      Neurology updates

      Neurology Update: Dementia and cognitive disorders

      February 18, 2021

      Eur J Neurol

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

      November 13, 2020

      Eur J Neurol

      EAN consensus statement for management of patients with neurological diseases during the COVID‐19 pandemic

      October 22, 2020

      Eur J Neurol

      BREAKING NEWS: A systematic review of neurological manifestations of SARS‐CoV‐2 infection: the devil is hidden in the details

      June 30, 2020

      Eur J Neurol

      EUROPEAN JOURNAL OF NEUROLOGY: CONTRIBUTIONS FROM SPANISH AUTHORS

      November 4, 2019

      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

      New Scales & Scores on Sleep-wake disorders

      January 21, 2021

      Scientific Corner

      Registrar’s Reading List: Epilepsy Panel

      November 2, 2020

      Scientific Corner

      Registrar’s Reading List: Dementia

      September 22, 2020

      Scientific Corner

      New Registrar’s Reading Lists from the Higher Cortical Functions Scientific Panel

      January 17, 2020

  • Educational
    • All E-Brain Grand Rounds Continuing medical education Resident and Research Fellows Fellowship reports Education corner
      Academic/Scientific

      New Scales & Scores on Dementia

      February 11, 2021

      Educational

      Clinical Fellowship Reports III 2019

      February 1, 2021

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      Clinical Fellowship Reports II 2019

      February 1, 2021

      Educational

      Clinical Fellowship Reports I 2019

      February 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

      E-Brain

      ebrain update: Changes in the ebrain team

      November 1, 2018

      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

      Continuing medical education

      CME online – June 2019 

      June 3, 2019

      Continuing medical education

      Continuing Medical Education

      February 21, 2019

      Continuing medical education

      CME online – October 2018

      October 1, 2018

      Continuing medical education

      CME online – July 2018

      July 24, 2018

      Resident and Research Fellows

      EAN Spring School 2020 – Virtual – Webcasts

      November 20, 2020

      Resident and Research Fellows

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

      November 13, 2020

      Resident and Research Fellows

      EAN VIRTUAL CONGRESS -Resident and Research Fellow Section General Assembly

      May 26, 2020

      Resident and Research Fellows

      EAN Virtual Congress: Round table Special Session: Unleash your potential with EAN!

      May 24, 2020

      Fellowship reports

      Clinical Fellowship Reports III 2019

      February 1, 2021

      Fellowship reports

      Clinical Fellowship Reports II 2019

      February 1, 2021

      Fellowship reports

      Clinical Fellowship Reports I 2019

      February 1, 2021

      Fellowship reports

      Clinical Fellowship Reports 2019 III

      December 21, 2020

      Education corner

      New Scales & Scores on Dementia

      February 11, 2021

      Education corner

      The First EAN Virtual Master Classes 2020 – Report

      January 1, 2021

      Education corner

      EAN Spring School – Application Deadline is 5 February 2021

      December 21, 2020

      Education corner

      Research Fellowship winners 2021

      December 1, 2020

  • Miscellanea
    • All Holiday Calendar Grant opportunities News from EAN member societies EBC EFNA News in general Topic of the Month/Week Patients societies reports Surveys Forum Uncategorized
      Miscellanea

      WFN Brain Health Awareness Public Webinar

      February 16, 2021

      COVID-19

      EMA’s Webinar on ”COVID-19 vaccination – what you need to know as a health professional”

      February 5, 2021

      Miscellanea

      Invitation to ”Inspiring people in Neurosciences” event

      February 1, 2021

      Miscellanea

      EAN and ESRS Memorandum of Understanding signed

      February 1, 2021

      Holiday Calendar

      EAN Calendar 2020 – Template For Printing

      December 12, 2019

      Holiday Calendar

      24.12. The last day

      December 24, 2018

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      December 23, 2018

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      22.12. A chance to win…

      December 22, 2018

      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

      EMA’s Webinar on ”COVID-19 vaccination – what you need to know as a health professional”

      February 5, 2021

      News from EAN member societies

      Personalized plans, blood biomarkers and early interventions: Think Brain Health conference highlights

      February 1, 2021

      News from EAN member societies

      New gene therapy to treat rare genetic disorder metachromatic leukodystrophy

      January 18, 2021

      News from EAN member societies

      2020 – BioMed Alliance celebrates 10 years of existence

      January 1, 2021

      EBC

      EBC launches statement on the impact of COVID-19 on brain health

      February 1, 2021

      EBC

      EBC launches new series of disease fact sheets!

      December 1, 2020

      EBC

      Present Your Business or Idea at the Brain Innovation Days Pitch Competition

      October 27, 2020

      EBC

      Save the date for the Brain Innovation Days launch!

      October 1, 2020

      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

      EFNA

      EFNA Advocacy Awards 2021 – ‘Action Against Stigma’

      October 1, 2020

      News in general

      WFN Brain Health Awareness Public Webinar

      February 16, 2021

      News in general

      EBC launches statement on the impact of COVID-19 on brain health

      February 1, 2021

      News in general

      European Neuromuscular Centre (ENMC) – Mid-Career Mentoring Programme

      February 1, 2021

      News in general

      Alzheimer Europe launches new guide targeted at health and social care workers and a policy briefing on intercultural care and support

      January 1, 2021

      Topic of the Month/Week

      Brain Awareness Week (BAW) is the global campaign to increase public awareness of the progress and benefits of brain research

      March 13, 2018

      Topic of the Month/Week

      Dystonia Europe celebrates 25 years

      March 13, 2018

      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

      Driving with an intracranial tumor

      July 13, 2020

      Surveys

      SURVEY: Driving with an intracranial tumor

      June 25, 2020

      Surveys

      EAN SURVEY: Neurological Symptoms in COVID-19 Patients

      April 10, 2020

      Surveys

      EMA communication: ICH Good Clinical Practice Guidelines (ICH E6) – Open Comment Opportunity – Deadline: 1 November 2019

      October 7, 2019

      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

      Uncategorized

      COVID-19 around the World: Clinician interviews on experience and impact of the virus (Saudi Arabia)

      January 12, 2021

      Uncategorized

      Effect of pre-exposure use of hydroxychloroquine on COVID-19 mortality: a population-based cohort study in patients with rheumatoid arthritis or systemic lupus erythematosus using the OpenSAFELY platform

      December 2, 2020

      Uncategorized

      COVID-19 around the World: Clinician interviews on experience and impact of the virus (New Zealand)

      November 24, 2020

      Uncategorized

      Report from the annual Pain Forum meeting

      November 2, 2020

  • EAN
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  • Congress 2021
  • EAN pages
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eanpages

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

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      COVID-19

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      COVID-19

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      COVID-19

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      COVID-19

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      COVID-19

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      COVID-19

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      COVID-19

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      Executive Page

      Executive page: From Website editor to Co-Chair Communication Committee

      February 1, 2021

      Executive Page

      Severe COVID-19-related encephalitis can respond to immunotherapy

      January 5, 2021

      Executive Page

      Executive Page: Happy New Year 2021 from the EAN, the Home of Neurology

      January 4, 2021

      Executive Page

      Executive Page: Recap of 2020 from Secretary-General

      December 1, 2020

      Country of the Month

      Country of the Month: Albania

      December 1, 2020

      Country of the Month

      Country of the Month: The Netherlands

      November 1, 2020

      Country of the Month

      Country of the Month: Serbia

      October 1, 2020

      Country of the Month

      Country of the Month: Kazakhstan

      September 1, 2020

      Paper of the Month

      COVID-19 Paper of the month: Safety and Efficacy of the BNT162b2 mRNA COVID-19 Vaccine

      February 1, 2021

      Paper of the Month

      Research Paper of the month: Trial of dexamethasone for chronic subdural hematoma

      February 1, 2021

      Paper of the Month

      COVID-19 Paper of the month: Neuropathology of patients with COVID-19 in Germany: a post-mortem case series

      January 1, 2021

      Paper of the Month

      Research Paper of the month: Safety and efficacy of prednisone versus placebo in short-term prevention of episodic cluster headache: a multicentre, double-blind, randomised controlled trial

      January 1, 2021

      EAN News

      European Academy of Neurology endorses the ALBA declaration on Equity and Inclusion

      January 25, 2021

      EAN News

      The First EAN Virtual Master Classes 2020 – Report

      January 1, 2021

      EAN News

      Welcome to new year by Editor-in-Chief

      January 1, 2021

      EAN News

      Congress Registration is open

      December 15, 2020

      EAN Congress news

      Congress Registration is open

      December 15, 2020

      EAN Congress news

      Abstract Submission is open

      December 15, 2020

      EAN Congress news

      EAN announces Virtual Congress in 2021

      December 1, 2020

      EAN Congress news

      Investigator Award Winners 2020

      September 14, 2020

      Interviews

      COVID-19 around the World: Clinician interviews on experience and impact of the virus (South Africa)

      February 5, 2021

      Interviews

      COVID-19 around the World: Clinician interviews on experience and impact of the virus (Japan)

      February 1, 2021

      Interviews

      Interview with Professor Andrea Winkler

      February 1, 2021

      Interviews

      Interview of the Month with Prof. Maged Abdel Naseer

      February 1, 2021

  • Academic/Scientific
    • All Scientific committee reports Scientific panels reports Breaking news Neurology updates Eur J Neurol Top 10 Articles Scientific Corner
      COVID-19

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      COVID-19

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      COVID-19

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      COVID-19

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      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

      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

      Scientific panels reports

      Scentific Panel of the Month: Higher Cortical Functions

      March 2, 2020

      Breaking news

      Assessing brain capillaries in coronavirus disease 2019

      February 25, 2021

      Breaking news

      Reports of anaphylaxis after receipt of mRNA COVID-19 vaccines in the US—December 14, 2020-January 18, 2021

      February 25, 2021

      Breaking news

      Effect of high-dose zinc and ascorbic acid supplementation vs usual care on symptom length and reduction among ambulatory patients with SARS-CoV-2 infection. The COVID A to Z randomized clinical trial

      February 25, 2021

      Breaking news

      Effect of a single high dose of vitamin D3 on hospital length of stay in patients with moderate to severe COVID-19: a randomized clinical trial

      February 25, 2021

      Neurology updates

      Neurology Update: Dementia and Cognitive Disorders

      February 18, 2021

      Neurology updates

      Neurology Update: Dementia and Cognitive Disorders

      February 18, 2021

      Neurology updates

      Neurology Update: Dementia and Cognitive Disorders

      February 18, 2021

      Neurology updates

      Neurology Update: Dementia and cognitive disorders

      February 18, 2021

      Eur J Neurol

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

      November 13, 2020

      Eur J Neurol

      EAN consensus statement for management of patients with neurological diseases during the COVID‐19 pandemic

      October 22, 2020

      Eur J Neurol

      BREAKING NEWS: A systematic review of neurological manifestations of SARS‐CoV‐2 infection: the devil is hidden in the details

      June 30, 2020

      Eur J Neurol

      EUROPEAN JOURNAL OF NEUROLOGY: CONTRIBUTIONS FROM SPANISH AUTHORS

      November 4, 2019

      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

      New Scales & Scores on Sleep-wake disorders

      January 21, 2021

      Scientific Corner

      Registrar’s Reading List: Epilepsy Panel

      November 2, 2020

      Scientific Corner

      Registrar’s Reading List: Dementia

      September 22, 2020

      Scientific Corner

      New Registrar’s Reading Lists from the Higher Cortical Functions Scientific Panel

      January 17, 2020

  • Educational
    • All E-Brain Grand Rounds Continuing medical education Resident and Research Fellows Fellowship reports Education corner
      Academic/Scientific

      New Scales & Scores on Dementia

      February 11, 2021

      Educational

      Clinical Fellowship Reports III 2019

      February 1, 2021

      Educational

      Clinical Fellowship Reports II 2019

      February 1, 2021

      Educational

      Clinical Fellowship Reports I 2019

      February 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

      E-Brain

      ebrain update: Changes in the ebrain team

      November 1, 2018

      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

      Continuing medical education

      CME online – June 2019 

      June 3, 2019

      Continuing medical education

      Continuing Medical Education

      February 21, 2019

      Continuing medical education

      CME online – October 2018

      October 1, 2018

      Continuing medical education

      CME online – July 2018

      July 24, 2018

      Resident and Research Fellows

      EAN Spring School 2020 – Virtual – Webcasts

      November 20, 2020

      Resident and Research Fellows

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

      November 13, 2020

      Resident and Research Fellows

      EAN VIRTUAL CONGRESS -Resident and Research Fellow Section General Assembly

      May 26, 2020

      Resident and Research Fellows

      EAN Virtual Congress: Round table Special Session: Unleash your potential with EAN!

      May 24, 2020

      Fellowship reports

      Clinical Fellowship Reports III 2019

      February 1, 2021

      Fellowship reports

      Clinical Fellowship Reports II 2019

      February 1, 2021

      Fellowship reports

      Clinical Fellowship Reports I 2019

      February 1, 2021

      Fellowship reports

      Clinical Fellowship Reports 2019 III

      December 21, 2020

      Education corner

      New Scales & Scores on Dementia

      February 11, 2021

      Education corner

      The First EAN Virtual Master Classes 2020 – Report

      January 1, 2021

      Education corner

      EAN Spring School – Application Deadline is 5 February 2021

      December 21, 2020

      Education corner

      Research Fellowship winners 2021

      December 1, 2020

  • Miscellanea
    • All Holiday Calendar Grant opportunities News from EAN member societies EBC EFNA News in general Topic of the Month/Week Patients societies reports Surveys Forum Uncategorized
      Miscellanea

      WFN Brain Health Awareness Public Webinar

      February 16, 2021

      COVID-19

      EMA’s Webinar on ”COVID-19 vaccination – what you need to know as a health professional”

      February 5, 2021

      Miscellanea

      Invitation to ”Inspiring people in Neurosciences” event

      February 1, 2021

      Miscellanea

      EAN and ESRS Memorandum of Understanding signed

      February 1, 2021

      Holiday Calendar

      EAN Calendar 2020 – Template For Printing

      December 12, 2019

      Holiday Calendar

      24.12. The last day

      December 24, 2018

      Holiday Calendar

      23.12. Last-minute gift idea

      December 23, 2018

      Holiday Calendar

      22.12. A chance to win…

      December 22, 2018

      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

      EMA’s Webinar on ”COVID-19 vaccination – what you need to know as a health professional”

      February 5, 2021

      News from EAN member societies

      Personalized plans, blood biomarkers and early interventions: Think Brain Health conference highlights

      February 1, 2021

      News from EAN member societies

      New gene therapy to treat rare genetic disorder metachromatic leukodystrophy

      January 18, 2021

      News from EAN member societies

      2020 – BioMed Alliance celebrates 10 years of existence

      January 1, 2021

      EBC

      EBC launches statement on the impact of COVID-19 on brain health

      February 1, 2021

      EBC

      EBC launches new series of disease fact sheets!

      December 1, 2020

      EBC

      Present Your Business or Idea at the Brain Innovation Days Pitch Competition

      October 27, 2020

      EBC

      Save the date for the Brain Innovation Days launch!

      October 1, 2020

      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

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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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