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16/5/2024Tuberous Sclerosis Complex Day – Alexis Arzimanoglou interviews

Alexis Arzimanoglou, coordinator of EpiCARE and Director of the Epilepsy Program at the Hospital Sant Joan de Déu Barcelona, has been interviewed by the Spanish newspaper 20minutos and by ¡Hola! magazine to talk about Tuberous Sclerosis Complex. 

The reason for these interviews is that 15 May was the Tuberous Sclerosis Complex (TSC) Global Awareness Day. Take 5 minutes to read it and learn more about this rare diseas. 

15/4/2024 – European Joint Programme on Rare Diseases

The registration deadline for the Final EJP RD Conference has been extended to May 22nd, 2024! Join us on May 27-28, 2024 for engaging sessions on rare disease research. Check out the agenda for a sneak peek into the sessions and plan your conference experience!
Register here and for more information.

10/4/2024 – EPIPED Course – Girona
EPIPED Course on Treatment Strategies in Paediatric Epilepsies proved once again being very much appreciated, with almost 80 participants, mentors and mentees, adult and child neurologists from 15 different countries! The course allowed attendees to discuss with experts about the best clinical practices and therapeutic strategies. This is the session programme we enjoyed! This was the 1st year of the 3years training cycle (2024-2026), held in Girona, a beautiful and sunny city in Catalunya, Spain. Professors Alexis Arzimanoglou, Jaume Campistol Plana, and Maša Malenica have been the course directors. The training course had the endorsement of ERN EpiCARE, ILAE Europe and other scientific societies. We enjoyed plenary sessions on relevant topics, as well as practical training sessions where participants were able to discuss use cases and situations related on treatment strategies in pediatric epilepsies. Moreover, we were able to enjoy networking in this lovely place.
25/3/2024“Managing Epilepsies in Crisis Situations – The Ukraine Experience”
On 21 March, ERN EpiCARE had the honour to welcome two eminent colleagues, also members of the Ukrainian chapter of the International League Against Epilepsy, Professors Andriy Dubenko and Volodymyr Kharytonov. They shared with us their experience during these 2 years of war, in an educational webinar on “Managing Epilepsies in Crisis Situations – The Ukraine Experience”. The webinar was moderated by Professors Maša Malenica and Alexis Arzimanoglou. They both renewed the full support of EpiCARE to patients and colleagues from Ukraine, in sharing expertise and for orienting patients, particularly war refugees with rare epilepsies, towards reference centres in Europe. Here you have the link to the recording.

11/3/2024Jardin project meeting in Brussels

On 8 March, the meeting of the investigators involved with the JARDIN project (Joint Action on integration of ERNs into national healthcare systems) was held in Brussels. The conference showcased a strong, united commitment from EU institutions, Member States, ERN Coordinators, EURORDIS, and the broader patient advocate community towards integrating ERNs into national healthcare systems and advancing EU rare disease policies. Many stakeholders were present, interesting discussions were held on a challenging project designed to serve patients with rare diseases. Thanks to HADEA for organising and hosting the event, to Till Voigtlaender for coordinating JARDIN, DG SANTE, ERN coordinators, patient and Board of Member States representatives and all others for their commitment.