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      Plans in progress for 30th Anniversary of the European Journal of Neurology (1994-2024)

      December 6, 2023

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      Executive Page: European neurology united as ever heading into milestone year

      December 6, 2023

      Paper of the Month

      Research Paper of the Month: Apixaban for Stroke Prevention in Subclinical Atrial Fibrillation

      December 4, 2023

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

      Research Highlights of the Month – December 2023

      December 1, 2023

      Executive Page

      Executive Page: European neurology united as ever heading into milestone year

      December 6, 2023

      Executive Page

      Executive Page: Join or renew your membership now and celebrate 10 years of the EAN

      November 6, 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

      EAN News

      Plans in progress for 30th Anniversary of the European Journal of Neurology (1994-2024)

      December 6, 2023

      EAN News

      Executive Page: European neurology united as ever heading into milestone year

      December 6, 2023

      EAN News

      Research Paper of the Month: Apixaban for Stroke Prevention in Subclinical Atrial Fibrillation

      December 4, 2023

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

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      Research Highlights of the Month – November 2023

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      Research Paper of the Month: Apixaban for Stroke Prevention in Subclinical Atrial Fibrillation

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      Research Paper of the Month: Effects of oral anticoagulation in people with atrial fibrillation after spontaneous intracranial haemorrhage (COCROACH)

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

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      EAN News

      Plans in progress for 30th Anniversary of the European Journal of Neurology (1994-2024)

      December 6, 2023

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      Executive Page: European neurology united as ever heading into milestone year

      December 6, 2023

      Paper of the Month

      Research Paper of the Month: Apixaban for Stroke Prevention in Subclinical Atrial Fibrillation

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      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

      EAN News

      Plans in progress for 30th Anniversary of the European Journal of Neurology (1994-2024)

      December 6, 2023

      EAN News

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      December 6, 2023

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      Research Paper of the Month: Apixaban for Stroke Prevention in Subclinical Atrial Fibrillation

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      Research Highlights of the Month – November 2023

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      Research Paper of the Month: Apixaban for Stroke Prevention in Subclinical Atrial Fibrillation

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      Paper of the Month

      Research Paper of the Month: Effects of oral anticoagulation in people with atrial fibrillation after spontaneous intracranial haemorrhage (COCROACH)

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      October 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

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

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EAN NewsScientific panels reportsCOVID-19Top Articles

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

May 13, 2020

Antonio FEDERICO, on behalf of the Managing Committee Members (M. De Visser, G. Plazzi, A. Arsovska, K. Bhatia, JM Burgunder, A. Toscano)

Rare neurological diseases are usually hereditary chronic disorders, affecting the central, peripheral nervous system and skeletal muscle, with clinically heterogeneous manifestations.

There are more than 3000 such disorders and, for the majority, there is no cure but only symptomatic drug therapies, rehabilitation, social and family assistance and care.

Individuals suffering from rare neurological diseases may be more vulnerable to infection during the COVID19 pandemic. In addition, restrictions, such as the lockdown at home, limit care continuity, rehabilitation care availability and contact with their doctors, frequently leading to worsening of motor symptoms and very likely also to mental stress.

We provide some guidelines and suggestions to protect patients to limit damage due to the prolonged lockdown.

A) Practical suggestions

At this moment, without a vaccine, we can protect ourselves and the patients following these general recommendations:

  • Avoid close contact with people who are sick.
  • Maintain distances (1.5-2 m) with other people.
  • Avoid touching your eyes, nose, and mouth.
  • Stay home when you are sick.
  • Cover your cough in your elbow or sneeze with a tissue, then throw the tissue in the trash.
  • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
  • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
  • Use a mask when you are in contact with other people.

B) Practical suggestions for home caregivers during quarantine

The precautionary restrictive measures taken by Governments may result in deterioration in people with dementia or other severe neurological disabilities. Forced lockdown can foster states of anxiety that can be difficult to manage, causing difficulties even to family members, who are often the main pillar of care for these patients.

The majority of Rare Neurological Diseases represent conditions that can affect the whole family and impact the lives of all members of the household. In these days of quarantine, patients, forced to stay indoors,  can become more agitated and aggressive, making delivery of  care more difficult for family caregivers, very often without any external support.

We here provide some practical advice:

  • Do not alter the rhythms of wakefulness and sleep, and try and maintaining the usual routine of the day: from the time of awakening, to breakfast, personal hygiene and clothing. Don’t stay in pyjamas all day.
  • Take advantage of today’s technologies such as video calls to contact friends and family and also your doctors.
  • Perform motor activities during the day, such as simple exercises, short walks around the building or on to a terrace to help relaxation.
  • Recover memories of the past perhaps through old photographs and movies.
  • Involve patients in the household’s daily activities such as cooking, setting, tidying up, etc.
  • Devote yourself to hobbies such as drawing, singing, listening to music, watching TV and chatting.
  • Plan daily activities.
  • Continue usual pharmacological treatments and stay in contact with your doctor.

C) Guidelines and available documents

COVID-19: guidance on shielding and protecting people defined on medical grounds as extremely vulnerable Public Health, England

EURORDIS EURORDIS-Rare Diseases Europe

NORD (National organization for Rare Diseases)

ORPHANET

The Association of British Neurologists

The European Academy of Neurology and their Panels:

Scientific Panel Statements on COVID19

ALS and frontotemporal dementia
Clinical Neurophysiology
Epilepsy 
Infectious Diseases
Neuroepidemiology
Neuroimmunology
Neuroscience/ translational neurology       
Autonomic nervous system disorders                    
Coma and Chronic Disorders of Consciousness      
Headache  
Muscle and MNJ Disorders
Neurogenetics 
Neurorehabilitation     
Neuro-oncology   
Pain      
Stroke
Child Neurology     
Dementia and cognitive disorders    
Neurocritical Care        
Movement Disorders         
Neurosonology

Many other reports, have been published by other societies, for example, Rare Movement Disorders and Parkinsonism.

Other Guidelines and Documents are available on the websites of the different European Reference Networks for Rare Diseases and in particular those related to Rare Neurological Diseases:

  • Rare Neurologic Disease ERN
  • Rare Euro-NMD
  • Epicare- Epilepsy ERN
Rare Neurological Diseases in the COVID-19 era: Suggestions for information to patients and caregivers was last modified: May 13th, 2020 by Editor
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