News

News

News

Launch of GRIN Portal

GRIN Portal, an interactive website for families, clinicians and researchers dedicated to comprehend GRIN-related disorders, often associated with epilepsy, has been launched.

Access the website

Global Community Advisory Board for Angelman syndrome

With the support of the European organization for rare disorders Eurordis, the International Angelman Syndrome Alliance (ASA) and the Angelman Syndrome Foundation (ASF) have formed a new joint initiative: the Global Community Advisory Board (CAB). They will work together to represent the Angelman community as a unified voice when engaging with pharmaceutical companies looking to enter research programs.

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WHO global actions on epilepsy

On November 2020, the World Health Organization proposed a draft resolution on global actions on epilepsy and other neurological disorders.

Read the draft resolution

ERNs explained in a video

A video that explains what European Reference Networks are has been released. It reminds how ERN, such as EpiCARE for rare epilepsies, might support patients to identify diagnosis or treatment.

Watch the video

ILAE 2019 annual report

The International League Against Epilepsy (ILAE) has released its 2019 annual report which marks its 110th birthday as it was founded on 30 August 1909.

Read the report

New information and support sheet on ketogenic rash

Matthew’s Friends association has published a new information and support sheet on ketogenic rash. This rash, some-times referred to as ‘Prurigo Pigmentosa’, can occur in the early days of starting a ketogenic diet or when MCT oil is introduced into a ketogenic diet.

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News of October 2020 from Robert-Debré CRéER

Publication of three papers by our team on:

*Ketogenic diet and neuroinflammation in Epilepsy Research.
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*The use of remote systems in epilepsy due to the COVID-19 pandemic in Epilepsy & Behavior.
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*Diagnosis and classification of idiopathic generalized epilepsies in Epileptic Disorders.
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News of September 2020 from Robert-Debré CRéER

*Professor Stéphane Auvin presented the ketogenic diet in the management of epilepsy during the first French session of the International League Against Epilepsy (ILAE) educational webinars on epilepsy.
Replay webinar

*Publication of a paper in French by our team in La Revue du Praticien on children with epilepsy.
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Launch of the International Neurological Ketogenic Society

The International Neurological Ketogenic Society was launched during the 7th Global Symposium on Ketogenic Diet Therapies. It aims to promote the practice and science of ketogenic diets and related metabolism-based therapies for neurological disorders through collaborative research, training, education, and outreach.

Access the website

EpiCARE e-learning modules

The European Reference Network for rare and complex epilepsies EpiCARE has released 5  e-learning modules on case studies developed with the International League Against Epilepsy (ILAE).

Try them out

Diagnostic and care protocol on profound intellectual and multiple disabilities

A French diagnostic and care protocol on profound intellectual and multiple disabilities has been translated in English.

Read the protocol

Glut1 Deficiency Foundation has published a guide on Glut1 Deficiency

Glut1 Deficiency Foundation has created a brochure to serve as a tool to increase awareness and improve education on Glut1 Deficiency.

Read the brochure

News of January 2021 from Robert-Debré CRéER

Publication of four papers by our team on:

*Biallelic PDE2A variants as a new cause of syndromic paroxysmal dyskinesia in European Journal of Human Genetics.
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*Corticosteroids versus clobazam in epileptic encephalopathy with ESES in Trials.
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*Real-life use of videos in pediatric epilepsy consultations in Epilepsy & Behavior.
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*Teleconsultation for rare pediatric epilepsies in Epilepsy & Behavior.
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The Nobel Prize in Chemistry 2020

The Royal Swedish Academy of Sciences has decided to award the Nobel Prize in Chemistry 2020 to Emmanuelle Charpentier and Jennifer A. Doudna for the development of a method for genome editing: the CRISPR/Cas9 genetic scissors. Researchers are currently investigating the application of gene therapy to treatment-resistant genetic epilepsy, such as Dravet syndrome.

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Webinar on Dravet syndrome genetics

A recording of Dravet Syndrome UK webinar on the genetics of Dravet syndrome from 24th September 2020 with Dr Andreas Brunklaus, paediatric neurologist at the Royal Children’s Hospital in Glasgow, is available online. In this webinar, Dr Brunklaus explains in detail the underlying genetic condition that causes Dravet syndrome.

Watch the webinar

ICD-10 new code for glucose transporter protein type 1 deficiency syndrome

Glucose Transporter Protein Type 1 Deficiency Syndrome (Glut1 Deficiency or GLUT1DS) is a rare neurometabolic disease caused by impaired glucose transport. It has just been assigned its own unique and specific ICD-10 diagnosis code in the upcoming addendum to the ICD system, which has taken effect on 1 October 2020. The new code of GLUT1DS is the E74.810 code, falling under the E category of diseases representing endocrine, nutritional, and metabolic disorders.

Previously, GLUT1DS was coded under a number of different, generic ICD-10 codes. This therefore represents a major milestone for the GLUT1DS community, as it will now provide a way to accurately track or learn from GLUT1DS patients and their experiences across healthcare systems.

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Events

Due to the COVID-19 pandemic, all of these meetings are subject to change.

FAST Forward Together – Global Summit & Gala
Date: 3-4 December 2021
At: Austin, USA
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GATOR1-related epilepsies
EpiCARE Webinar
Date: 9 December 2021
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International Epilepsy Day
Date: 14 February 2022
At: Worldwide
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48th European Society of Pediatric Neurology Meeting
Date: 17-19 March 2022
At: Lausanne, Switzerland
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2nd KCNB1 European Meeting
Date: 19 March 2022
At: Paris, France
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3rd International Training Course on Neuropsychology in Epilepsy
Date: 20-25 March 2022
At: Bordeaux, France
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EEG in the First Year of Life: From Newborn to Toddler
Date: 10-13 April 2022
At: Cambridge, UK
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2022 GRIN Conference
Date: 21-24 April 2022
At: Boston, USA
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14th European Paediatric Neurology Society Congress
Date: 28 April – 2 May 2022
At: Glasgow, UK
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16th EILAT Conference on New Antiepileptic Drugs & Devices
Date: 22-25 May 2022
At: Madrid, Spain
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8th Congress of the European Academy of Neurology – Europe 2022
Date: 25-28 June 2022
At: Vienna, Austria
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14th European Epilepsy Congress
Date: 9-13 July 2022
At: Geneva, Switzerland
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2022 Glut1 Deficiency Foundation Conference
Date: 11-15 July 2022
At: San Diego, USA
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5th Dianalund Summer School on EEG & Epilepsy
Date: 16-23 July 2022
At: Dianalund, Denmark
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11th International Summer School for Neuropathology and Epilepsy Surgery
Date: 8-11 September 2022
At: Erlangen, Germany
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