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.
Lastest News
First recommendations of European Reference Networks on Rare Diseases on COVID vaccination program
Read more here.
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.
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.
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
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.
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.
International League Against Epilepsy new virtual campus
The ILAE Academy provides a virtual campus where healthcare professionals obtain and increase essential and clinically relevant knowledge, skills, and competencies in the field of epilepsy.
Registered users can work on their competencies in epilepsy from a varied course portfolio according to different levels of proficiency. Define the learning path, track progress and earn certificates. All in one place! From the images in this post can you link directly to www.ilae-academy.org
In search of Lost Time in children and adolescents with epilepsy
Do not loose time,
Save the date and register
Virtually in Rome, 17-18 December 2020
EpiCARE workshop
Two days. 9 plenary sessions. No fee.
Registration is compulsory and will close on December 14th: www.ptsroma.it/romaepicare2020
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List of the sessions:
Session #1
National networks and their role in implementing Guidelines in everyday clinical practice for the top-5 rare
& complex epilepsies (including Dravet Syndrome, Lennox-Gastaut Syndrome, CLN2, Tuberous Sclerosis,
Infantile Spasms)
Chairs: Nicola Specchio – Eugen Trink
Session #2
A 3 years strategy for implementing EEG monitoring guidelines for neonates in the EU
Chairs: Carmen Fons – Ronit Pressler
Session #3
What do we learn from surgery case-reports operated on very early in the course of the epilepsy?
Chairs: Ingmar Blumke – Tiziana Granata
Session #4
Early genetic screening: when, for whom and how
Chairs: Renzo Guerrini – Gaëtan Lesca
Session #5
Targeted medical therapies and clinical trials: identifying the EU priorities for the next 5 years
Chairs: Emilio Perucca – Federico Vigevano
Session #6
What should be the role of the ERNs in 2030: first thoughts on the evolution of EpiCARE
Chairs: Alexis Arzimanoglou – Helen Cross
Session #7
Patients building bridges with the scientific world
Chairs: Isabella Brambilla (ePAG – coordinator) – Torie Robinson (ePAG) – Nicola Specchio
Session #8
Undiagnosed epilepsy patients, how to build a patient centered care pathway
Chairs: Lieven Lagae – Paolo Tinuper
Session #9
Digitalized tools at the service of epilepsy care
Chairs: Paolo Curatolo – Petr Marusic
