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.
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.
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
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
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.
Save the date for EpiCARE 2022 Annual General Assembly to be held in Lyon, France.
More information will be provided soon.
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.
Solve-RD is a Horizon2020-funded project, dedicated to ‘solve the unsolved rare diseases’. European Reference Networks (ERNs) are the European clinical expertise centers for rare diseases …
SAVE THE DATES FOR IMPORTANT EpiCARE ACTIVITIES TO COME December 16th afternoon – 19th (midday), 2021: EpiCARE brainstorming face-to-face workshop in Rome, Italy (a follow-up …
It is our pleasure to share with all of you the report of a survey on Epilepsy and Pregnancy recently diffused by the International Bureau …
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Funding
The ERN EpiCARE was created in 2017 and is co-funded by the European Union.
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