EpiCARE: a European Reference Network
for rare and complex epilepsies

The Young Epilepsy Research Retreat, hosted by Professor Helen Cross OBE, The Prince of Wales’s Chair of Childhood Epilepsy, is an annual gathering of researchers and collaborators across our research partnership. This meeting gives researchers, at all stages of their careers, the opportunity to discuss ongoing projects, completed projects and future directions of research with a unique diversity of epilepsy specialists.

This year the Professor Elaine Wirrell, Director of Pediatric Epilepsy at Mayo Clinic, USA, is the Moderator and guest of honour. Elaine’s clinical focus includes early-onset epilepsies and epileptic encephalopathies, medically intractable paediatric epilepsy, Ketogenic diet therapies, and epilepsy surgery. In addition to her clinical activities, Professor Wirrell is an eminent researcher and co-founder of the Pediatric Epilepsy Research Consortium, a multicentre group of paediatric epileptologists who collaborate on clinical research in early-life epilepsies.

More information to come soon.

The 11th EPODES Basic is an interactive course on surgically remediable epilepsies, presurgical evaluation, scalp and intracranial EEG, neuropsychology, imaging and psychiatric issues of surgical patients before and after surgery. EPODES courses are organized in three-year cycles. This year the course will be dedicated to epilepsy surgery focused on mainly basic information including selection of surgical candidates, presurgical evaluation, different focal epilepsies. And surgical techniques with outcome. The program consists of presentations by keynote speakers and case presentations by tutors and students.

The course is organized as part of the European Project of Development of Epilepsy Surgery Programs (EPODES) under aegis and with funding from Commissions of Epilepsy Surgery and European Affairs of ILAE.

11th EPODES Basic – Annoucement

11th EPODES Basic – Programme

The association “Fuori dall’ombra, insieme per l’Epilessia”, organise the 5th Convention update in epileptology, an important event that aims to educate and inform in order to improve the health and living conditions of those affected by this disease, and to help dispel discriminatory social prejudices regarding the right to study and integration into the world of work.

Programme and more information here. 

This year, the symposium will be held in a hybrid format (onsite and online). 

Save the date for the 7th International Symposium on Paediatric Movement Disorders which will take place in Barcelona on February 9-11, 2022.

The aim of this event is to pursue the collaborative activities among professionals interested in paediatric movement disorders successfully started in the Symposium 2004.

The best qualified experts involved in paediatric movement disorders will take part in this Symposium.

Programme is available here.

This event is endorsed by EpiCARE.

WHAT?

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Why?

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

WHO?

Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organisations who group together several rare disease organisations in a given country or region. Click on a logo of one of the National Alliances to go to their website.

WHERE?

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 100 countries all over the world in 2020. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

WHEN?

The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.

On rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February. If you are planning an event, register your event details on the Post your Event page to get your event listed on the site!

The European Society of Pediatric Neurology is organising its 48th meeting in Lausanne, Swizerland.

The programme is available here.

Estimed members of EpiCARE will be present at the event.

On behalf of the Neuropsychology Task Force of the International League Against Epilepsy, we are pleased to announce the third residential ILAE Training Course in Neuropsychology in Epilepsy.

Set in the beautiful Château de Suduiraut in Bordeaux, France, the course is designed for neuropsychologists and other epilepsy health clinicians to advance their knowledge of neuropsychological approaches to the diagnosis and treatment of people with epilepsy.

Participants will take part in lectures, case presentations, and discussions designed to illustrate contemporary principles of differential diagnosis and case formulation in neuropsychological practice in epilepsy and epilepsy surgery. Course material will be presented by an international faculty made up of the clinicians who are at the forefront of evidence based practice in this field.

With strictly limited numbers and full board accommodation on site, the course provides unparalleled opportunities for participants to build lasting professional networks to support both their clinical and research endeavors on completion of the course.

We hope you can join us, and look forward to welcoming you in Provence.

Sarah Wilson and Sallie Baxendale
Course Directors

Core Course Faculty:
Sarah Wilson (Melbourne, Australia)
Sallie Baxendale (London, UK)
Gus Baker (Liverpool, UK)
William Barr (New York, USA)
Christoph Helmstaedter (Bonn, Germany)
Bruce Hermann (Wisconsin, USA)
Séverine Samson (Paris, France)
Mary-Lou Smith (Toronto, Canada)

Registration

Please register in advance as spaces will be limited to 45 participants. Applications must be received by 31 December 2021. We urge that you apply as soon as possible to reserve your place and avoid disappointment.

Applications should include a brief description of your current clinical practice and experience in the field of neuropsychology and/or epilepsy, accompanied by a short CV (no more than 3 pages).

Please send your application via email to Dr Sallie Baxendale. Full payment is not required with the application, but if your application is successful, a depost of $500 will be required to secure your place. Deposits will be refunded if the course does not take place. However if you are unable to attend due to local travel restrictions at the time of the conference, we will be unable to refund course fees. You may wish to consider insurance to cover this eventuality.

Registration fee: 1,750 Euros

This fee covers the cost of all teaching, course materials, five nights all inclusive, full board accommodation and transfers to and from the venue from the air and rail travel hubs close to the venue (Bordeaux International Airport, Gare Bordeaux St Jean).

Some full and partial bursaries are available for clinicians working in resource poor countries. Please indicate in your application if you would like to apply for a funded place.

For more information contact Dr Sallie Baxendale