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e-learning facilities

E-learning modules

The first 6 case studies developped with the ILAE are now available !

Each e-learning module presents exemplarily a patient cases in a highly interactive and self-paced manner, including exercises and quizzes with feedback.

You can try them out here.

Free webinars on rare epilepsies

EpiCARE ERN has launched a series of educational webinars presented by our experts twice a month.

The webinars are free to join from anywhere in the world, although pre-registration is required.

 More information here

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 (28 full members and 15 affiliated partners) in 24 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.

EpiCARE members

The objectives of the EpiCARE network

Universal

Accessibility

To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.

Heartbeat

Developing treatment

To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.

Shapes

Awareness

To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.

Book

Education

To enhance educational activities and training opportunities across Europe by interchange across the network.

Rocket

Collaborative research

To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.

Agenda

Oct
6
Wed
EPICLUSTER : Accelerating patient involvement in European Epilepsy research
Oct 6 @ 9:30 am – 1:00 pm

Accelerating Patient Involvement in European Epilepsy Research

With the overarching goal of showcasing ways and best practices for bringing people with epilepsy and researchers to work together on common ground, this EPICLUSTER event aims to unveil the opportunities arising from patient involvement in epilepsy research. The workshop will begin with an overview of definitions, trends, and key themes around PPI and how they can successfully advance epilepsy research. Hints and case histories will lead participants to learn the “why”, “how”, and “what” of patient involvement in research.

PROGRAMME HIGHLIGHTS

• Understanding the potential of PPI in epilepsy research

• Learning how epilepsy researchers can work with people with epilepsy and their representatives

• Envisioning the way forward: how to incorporate patient involvement into epilepsy research so to fundamentally change the way policy-makers, funders, and regulators view epilepsy

WHO SHOULD ATTEND THIS EVENT?

This event is designed to encourage researchers to learn about PPI and how to begin to integrate it into their research programs. It is relevant to students, postdocs, and faculty. People with lived experience of Epilepsy interested in getting involved with research teams are welcome to attend.

ORGANIZED BY: EPICLUSTER was funded by the EU-funded European Brain Research Area (EBRA) project in late 2019 as a two-year networking action to enhance the coordination of epilepsy research in Europe. The primary objective of EPICLUSTER is to establish a collaborative framework for the coordinated actions of epilepsy research in Europe, based around shared partnerships and research priorities.

New to PPI? Please find more general info here.

More info: https://www.ebra.eu/epicluster/

Flyer of the event: Flyer-EPICLUSTER-activity-FINAL

Oct
28
Thu
3rd International Congress on Mobile Device and Seizure Detection in Epilepsy @ Copenhagen, Denmark
Oct 28 – Oct 30 all-day

Recent advances in signal analysis and information technology have triggered a boom in the field of mobile health, with important applications to the management of patients with epilepsy, including seizure detection.

The International Congress on Mobile Health and Seizure Detection in Epilepsy became an important forum to disseminate, facilitate and accelerate progress in the development of mobile health solutions and seizure detection devices for patients with epilepsy.

The third edition of the congress will enhance information-exchange among researchers, high-tech companies, medical organizations and patients´ organizations facilitating networking, development of joint projects and collaborations in this quickly developing field.

In addition, interactive, educational hands-on sessions will contribute to the dissemination of novel technologies.

Main topics:
Pre-congress workshop on home video-EEG monitoring. Automated seizure detection in long-term video-EEG monitoring will be included into the pre-congress workshop

• Automated seizure detection using wearable devices: Which device for which patient?
• New devices: Is there a disruptor?
• From seizure detection to action: linking devices with interventions
• Wearable devices and differential diagnosis
• Seizure prediction: are we there yet?
• Objective seizure quantification and characterization
• Epilepsy apps: are they really changing the game?
• Telemedicine: are changes in practice caused by COVID-19 here to stay?
• Future research and development: in the aftermath of the clinical practice guideline on seizure detection – Panel discussion

More information

Dec
16
Thu
EpiCARE workshop in Rome, Italy
Dec 16 @ 12:00 pm – Dec 18 @ 2:00 pm

This face-to-face brainstorming workshops is a follow-up of the « In search of Lost time » virtual workshop held in 2020.

More information will be provided soon.

If you have any questions, you can send an e-mail to info@epi-care.eu, or contact the organizing secretariat :

ORGANIZING SECRETARIAT

Via Nizza, 45 – 00198 Roma, Italy

Ph : +39 06 85355590 – Fax : +39 06 85356060

e-mail : maura.stella@ptsroma.it – www.ptsroma.it

 

Feb
8
Tue
EURORDIS Black Pearl Awards @ VIRTUAL
Feb 8 @ 6:00 pm – 7:30 pm
EURORDIS Black Pearl Awards @ VIRTUAL

The eleventh edition of the Awards will take place online on TUESDAY, 8th FEBRUARY 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more.

The February event is an annual awards ceremony launching the month of Rare Disease Day. Since 2012, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policymakers, scientists, companies, and media who strive to make a difference for the rare disease community.

Feb
17
Thu
EpiCARE annual meeting 2022
Feb 17 @ 9:00 am – Feb 18 @ 6:00 pm

Save the date for EpiCARE 2022 Annual General Assembly to be held in Lyon, France.

More information will be provided soon.

Jul
18
Mon
18th San Servolo Advanced Epilepsy Course – postponed to 2022 @ San Servolo, Venice, Italy
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.

More details

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