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Memorandum of Understanding signed with the EPNS
The EPNS, European Paediatric Neurology Societey …
EpiCARE: a European Reference Network for rare and complex epilepsies
The European Reference Networks (ERNs) were launched in 2017. They involve more than 900 highly specialised health care teams, located in more than 300 hospitals in 26 European countries. The main mission of the ERNs is to help patients with rare or low-prevalence complex diseases.
A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5 000 and 8 000 of rare diseases affect daily life of around 30 million people in the EU.
The ERN EpiCARE brings together highly specialized health centres (38 full members and 12 affiliated partners) in 26 European countries with expertise in rare and complex epilepsies.
If you are a healthcare professional and would like to refer a patient to us, or if you are a patient yourself, or a family member of a patient, please get in touch via our contact page.
The objectives of the EpiCARE network
Accessibility
To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.
Developing treatment
To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.
Awareness
To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.
Education
To enhance educational activities and training opportunities across Europe by interchange across the network.
Collaborative research
To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Agenda
May
24
Tue
The Matthew’s Friends Ketocollege training programme has been designed and written by a board of very distinguished and experienced medical experts who specialise in ketogenic therapy. This training programme is suitable for those new to ketogenic therapy as well as those who may wish to attend a refresher course and update their skill set. The information provided is reviewed and updated each year by our programme mentors and authors so that we can ensure the latest information and research is available to all those who attend.
Bursaries are now closed. There is a discount code for KetoCollege 2022 bookings for EpiCARE members, to be used at www.ketocollege.co.uk selecting the OFFLINE registration option. 20% off discount codes – £295 early-bird reduced to £236 if booked by 30th April
If you are a EpiCARE member and wish to attend the KetoCollege, send an e-mail to anne.robert@chu-lyon.fr to get the promo code!
Jun
9
Thu
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
Jun
25
Sat
Jun 25 – Jun 28 all-day
Overarching Theme Europe 2022: Getting evidence into practice
For EAN 2022, our overarching theme is ‘Getting Evidence into Practice’ and we have put together a range of workshops and symposia addressing this subject. Leading specialists will tackle timely and relevant questions such as which clinical trial designs best inform practice; what evidence informs the use of diagnostic tests; are guidelines a useful tool for improving outcomes; and how do we get guidelines applied and implemented?
The overarching theme will be the focus of many sessions, with something for every category of participant, from trainees to veterans, whether clinician or scientist, general or specialised.
Focused Workshop 02
Saturday, 25 June 2022, 08:00-09:30
How do we ensure the timely generation of evidence that will improve lives and reduce burden?
- Benefits and pitfalls of rapid implementation during a pandemic
- Is neurology following or leading in the development of prognostic biomarkers?
- New treatment paradigms; who defines them?
Focused Workshop 11
Sunday, 26 June 2022, 08:00-09:30
Implementing evidence: What have we learned and what must we do better?
- Implementation in the acute and emergency setting.
- Implementation when both expertise and high-quality evidence are scarce.
- Implementation in a chronic disease across the life course.
Plenary Symposium 03
Monday, 27 June 2022, 10:00-12:00
Improving lives and reducing burden: What evidence do we need to implement?
- Do neurology trials inform everyday clinical practice, if not why not and what should be done to make sure that they do?
- How do we ensure the appropriate development and implementation of diagnostic technologies in neurology, and what does the neurologist need to know?
- Are guidelines a useful tool for improving outcomes in neurology?
- How does the general neurologist find what is important and relevant in an era of information overload and increasing complexity?
EpiCARE is collaborating with the EAN and will of course be present at the congress. Come meet us at our booth for a chat or more information on our ERN and our activities.
Jun
27
Mon
Jun 27 – Jul 1 all-day
ECRD 2022 Programme
ECRD 2022 has been designated as an official event of the 2022 French Presidency of the Council of the European Union.
The ECRD 2022 programme mirrors the afore-mentioned political opportunities and policy milestones and also presents an opportunity to hear from the European and international institutions, key opinion leaders working in the field and persons living with a rare disease to shape the best possible future framework of policies.
ECRD 2022 will take place fully online and is spread over 5 half days, providing the opportunity to build upon the success from the last online conference, expand outreach to key stakeholders, showcase strong political support and build momentum for post-ECRD 2022 implementation. ECRD 2022 will also be among our most inclusive and sustainably responsible conferences to date!
On the first day of ECRD 2022, the Opening Plenary Session sets the scene for this year’s online conference and will be followed by an orientation and networking session along with several parallel Thought Leader sessions.
The following three days are dedicated to discussions on how to reach our 3 visionary goals for people living with a rare disease, inspired by the Rare 2030 project and implemented through a new policy framework.
A Closing Plenary on Day 5 reminds the audience that rare diseases must be addressed across all of Europe (beyond the EU) and on a global scale. This closing session will also leave participants with a clear call to action in the immediate, medium and long-term future.
Jul
4
Mon
Jul 4 – Jul 8 all-day
WONOEP XVI, a satellite event of the 14th ILAE European Epilepsy Congress, will take place at Talloires, France. The main topic of WONOEP XVI is “Early onset epilepsies: neurobiology and novel therapeutic strategies”. The overall purpose of WONOEP XVI will be to provide novel insights on early onset epilepsies, underlying neurobiology and strategies towards the development of new treatments.
This will include novel insights into brain development, and how its dysfunction may lead to epilepsy and its comorbidities; the role of genetic factors, in particular somatic mosaicism, in focal malformations of cortical development; the discussion on relevant disease models, including brain organoids and experimental models, and their contribution to a better understanding of developmental epileptogenic processes; the development of improved diagnostic tools for the localization of the epileptogenic zone in structural epilepsies; novel therapeutic strategies for precision treatments. Both preclinical and clinical studies will be considered.
Abstract submission opens on 30 November 2021 and closes on 31 January 2022. Abstracts of 300 words or less should be submitted through our online submission system.
Applicants should submit abstracts of their work that address the following session themes:
- Session A: Factors leading to abnormal brain development and early onset epileptogenesis and comorbidity development.
- Session B: What are the genetic factors and role of somatic mosaicism?
- Session C: Modeling early onset epilepsies.
- Session D: Advanced tools for the diagnosis of structural epileptogenic substrates.
- Session E: Targeted therapy development.
A maximum of 40 abstracts strictly related to the main topic will be selected and the authors will be invited to WONOEP in February 2022. Lodging and meals will be provided to the selected participants. Travel costs will not be supported. A WONOEP registration fee of 100 Euros is applied to all selected participants which should be paid before 8 April 2022. However the WONOEP registration fee will be waived if the invited authors also submit an abstract, present or register for the 2022 ILAE European Epilepsy Congress in Geneva.
Requests for bursaries for travel expenses may be considered after notification of abstract selection, for selected investigators invited to participate in the WONOEP and depending on funding availability.
Participants in this face-to-face workshop will be limited to individuals who are fully and up-to-date vaccinated for COVID-19 with eligible vaccines and according to the following guidelines:
https://www.diplomatie.gouv.fr/en/coming-to-france/coronavirus-advice-for-foreign-nationals-in-france/
WONOEP 2022 is organized by the WONOEP Task Force of the ILAE Neurobiology Commission and the Neurobiology Commission of the ILAE.
Scientific Organizing Committee: Stéphane Auvin, Stéphanie Baulac, Aristea S. Galanopoulou, Terence O’Brien, David Henshall, Özlem Akman, Raman Sankar
For WONOEP queries please contact: wonoep@ilae.org
Jul
9
Sat
The Scientific and Organising Committee is working to create a programme that represents the best European and global epileptology.
The programme will cover all aspects of epileptology, but four main themes have been selected, representing Adult Epileptology, Basic Science, Paediatric Epileptology and Pharmacology.
Sessions will include the Chairs’ Symposium, Special Symposia, Teaching Courses and Sessions, Platform Sessions, ECE Forums, the Symposium of Excellence in Epileptology, among others.
Please check back here for updates as the SOC develops the programme.
Jul
14
Thu
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
Jul
16
Sat
DSSEE is an advanced course on EEG and its application in the field of epilepsy. The course is practically-oriented, with many hands-on sessions, and it is highly interactive.
The main idea of the course is to bridge the gap between epileptologists and neurophysiologists. Therefore, topics both in the realm of signal analysis and topics related to seizure semiology and clinical significance of EEG findings will be covered.
The theoretical presentations (in the morning) will be supplemented by EEG-reading sessions, where the participants will be guided through video-EEG samples by the tutors. The last day of the course will be dedicated to discussion of difficult cases brought by the participants.
The course is limited to a maximum of 20 participants. The applicants are expected to have a solid theoretical and practical knowledge of EEG (at least 1 year training in EEG). Alumni of VIREPA-EEG courses will have priority.
Jul
18
Mon
Jul 18 – Jul 29 all-day
The main objective of the 7th edition of the Advanced Epilepsy Course Bridging Basic with Clinical Epileptology is to train attendees to improve the critical competencies necessary to design an effective research project/activity in the field of epilepsy.
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