EpiCARE News and Events

The European rare disorder ecosystem: Norway ready or not?

A webinar about ERNs and Norway’s role on the international arena of rare disorders

This webinar took place on June 18th 2021, 10am 2pm

In this webinar, the collaboration for rare disorders with a special focus on European Reference networks (ERN) and Norway’s role was the focus. Norway is already part of a few ERNs, but many more Norwegian health care providers are on their way into more networks. However, there are challenges ahead of us and we need to work together to solve them. One critical question is the accessibility of Clinical Patient Management System (CPMS) which currently is unavailable from Norwegian hospitals.

ILAE logo

ILAE – Europe Committee Elections

We are glad to announce that Alexis Arzimanoglou, coordinator of EpiCARE, and Nicola Specchio, estimed member of EpiCARE, have been elected as members of the International League Against Epilepsy Europe Committee (2021-2025 term).

They are looking forward to contributing to the development of even stronger links between the Ilae-Europe Regional Board and EpiCARE, and working alongside the other members of the board.

We also extend our congratulations to the new Chair Matthew Walker, coordinator of one of EpiCARE’s UK collaborating partners.

Master in Adult and Childhood Epileptology in Spanish – Universitat de Barcelona

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The 2022 registration is now open

The Master in Epileptology organised by the ERN EpiCARE centre Hospital San Juan de Dios – Hospital Clinic, in collaboration with the Universitat de Barcelona is a full time training one year course starting January 2022.

Clinical and EEG training is delivered in Spanish. The number of students is limited to 4 per year.

For more information contact the Master Secretariat: Mrs Susana Párraga: sparraga@sjdhospitalbarcelona.org and download some spanish information here.

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Poster 33rd eENE congress

33º eENE virtual congress

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The 33eENE had as a transversal theme: the advances in the last 10 years in the several areas of epilepsy. It took place on 12 and 13 March, maintaining the already usual satellite symposia and conversations with the specialists of the IF responsibility.

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EpiCARE logo

EpiCARE annual meeting

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Unfortunately the 2021 EpiCARE annual meeting had to be virtual. To facilitate interaction and quality of attendance the Steering Committee privileged splitting it into 3 afternoon sessions and avoid full-day sessions. The sessions started on Wednesday 24th, Thursday 25th and Friday 26th of March.

Only members of EpiCARE medical teams (full and affiliated), an ePAG delegation and some invited speakers were authorised to register.

Download here the detailed program.

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Webinars about rare and complex epilepsies

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On the occasion of International Epilepsy Day and Rare Disease Day,2 webinars took place:
– the Italian webinar on 19 February 2021 from 15:30 to 18:30.
– the Spanish webinar on 19 February 2021 from 16:00 to 19:00.

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Research training workshop

EJPRD CALL ANNOUNCEMENT

Applicants from ERN Full Members or Affiliated Partners can submit WORKSHOP TOPICS on rare diseases research to obtain funds (25.000€) in order to conduct a 2-day workshop. For more information you can visit this website.

Covid19 vaccine and epilepsy

First recommendations of European Reference Networks on Rare Diseases on COVID vaccination program

Read more here.

COVID19 vaccine and epilepsy

COVID-19 vaccines and people with epilepsy

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Covid-19 vaccines and epilepsy

Vaccines against COVID-19 are currently being approved and becoming available.

What are the recommandations regarding Covid-19 vaccines and epilepsy?
There is currently no evidence to suggest that having epilepsy is specifically associated with a higher risk of side effects from a COVID-19 vaccine. Furthermore, for people with epilepsy, the risk of COVID-19 infection and potential complications far outweighs the risk of side effects from a COVID-19 vaccine. As with other vaccines however, a fever can develop after a COVID-19 vaccination. This could lower the seizure threshold in some people. Minimize the risk by taking Antipyretics (e.g. paracetamol/acetaminophen) regularly for 48 hours after the vaccination (or for the duration of fever).

Reminder: if you already received the COVID-19 vaccine, it is important to continue wearing a mask and respect social distance. The current vaccines reduce your risk of getting sick from COVID-19 by up to 90%, depending on the vaccine. However, vaccinated people may still be able to spread COVID-19 to others without knowing they are carrying it.

Learn more about covid-19 vaccines for people with epilepsy.

Our recommandations regarding Covid-19 and epilepsy

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What’s new in Progressive Myoclonic Epilepsy? Webinar on March 17th

Italian EpiCARE teams in collaboration with EISAI organised a free of charge webinar on “What’s new in Progressive Myoclonic Epilepsy” on March 17th – 16h00-19h00 (CET)

The program is still available here.

 

 

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