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EpiCARE News and Events

Poster 33rd eENE congress

33º eENE virtual congress

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.

EpiCARE logo

EpiCARE annual meeting

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.

Webinars about rare and complex epilepsies

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.
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

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

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.

 

 

networking event

EJP RD information/networking event

In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be organized on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30.

All interested applicants are invited to participate in this event. The objectives of the meeting are as follows:

  • Presentation of the call modalities and objectives followed by Q&A session with participants
  • Presentation of various perspectives of the remaining challenges that the present call will target (for example in relation to: use of registries, innovation in methodology space, PCOMS, pharmacogenetic biomarkers and pharmacokinetics development, the vision of regulators on future of RD clinical trials, model for innovating therapy in ultra RDs, ethical guidance)
  • Open session for participants to discuss the gaps that they would like to tackle and initiate partnerships among interested parties.

The registration to the meeting is mandatory and will close on the 18 of January 2021. 

Please register here and the detailed agenda of the meeting can be found here.

If you have any questions or need help please contact us at: innovation.callsec@ejprarediseases.org 

epilepsy colloquium

The 13th International Epilepsy Colloquium

The 13th International Epilepsy Colloquium went virtual !

The Covid-19 global pandemic showed no signs of easing at the time and kept having an adverse effect on the smooth running of a meeting in London.

In light of this, the 13th International Epilepsy Colloquium went digital on May 20-22, 2021.

More than ever, the goal of this colloquium was to bring together worldwide leaders involved in epilepsy to discuss new results, candidate therapeutics, and methodological issues.

the-lancet-vector-logo

ERN Brexit Lancet letter

A letter by ERN GENTURIS member prof Marc Tischkowitz from Cambridge UK, on the detrimental effects of a no-deal Brexit to rare disease patients in the UK, was published in the Lancet.

The letter has a total of 73 signatories, 54 signatories from UK senior clinicians and researchers who are currently members of an ERN, as well as 19 signatories each representing a patient support group.

Click here to read it.