Draft Intersectoral Global Action Plan on Epilepsy Approved by the World Health Organization
During the 150th session of the World Health Organization Executive Board, the draft Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) was approved. This draft will be presented in May 2022 to the World Health Assembly for an adoption vote by all Member States in May 2022.
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.
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.
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.
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.
News of October 2020 from Robert-Debré CRéER
Publication of three papers by our team on:
*Ketogenic diet and neuroinflammation in Epilepsy Research.
*The use of remote systems in epilepsy due to the COVID-19 pandemic in Epilepsy & Behavior.
*Diagnosis and classification of idiopathic generalized epilepsies in Epileptic Disorders.
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.
*Publication of a paper in French by our team in La Revue du Praticien on children with epilepsy.
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.
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.
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.
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.
*Corticosteroids versus clobazam in epileptic encephalopathy with ESES in Trials.
*Real-life use of videos in pediatric epilepsy consultations in Epilepsy & Behavior.
*Teleconsultation for rare pediatric epilepsies in Epilepsy & Behavior.
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.
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.
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.
Due to the COVID-19 pandemic, all of these meetings are subject to change
XVI Workshop on Neurobiology of Epilepsy – Early Onset Epilepsies: Neurobiology and Novel Therapeutic Strategies
Date: 4-8 July 2022
At: Talloires, France
Epilepsy after traumatic brain injury
Date: 7 July 2022
14th European Epilepsy Congress
Date: 9-13 July 2022
At: Geneva, Switzerland
2022 Glut1 Deficiency Foundation Conference
Date: 11-15 July 2022
At: San Diego, USA
5th Dianalund Summer School on EEG & Epilepsy
Date: 16-23 July 2022
At: Dianalund, Denmark
Date: 21 July 2022
11th International Summer School for Neuropathology and Epilepsy Surgery
Date: 8-11 September 2022
At: Erlangen, Germany
14th International Epilepsy Colloquium
Date: 14-16 September 2022
At: Lausanne, Switzerland
17th International Child Neurology Congress
Date: 3-7 October 2022
At: Antalya, Turkey
49th SENP Meeting
Date: 17-18 March 2023
At: Brussels, Belgium
35th International Epilepsy Congress
Date: 2-6 September 2023
At: Dublin, Ireland
8th Global Symposium on Ketogenic Therapies
Date: 17-21 September 2023
At: San Diego, USA
More information to come