Latest news
9/7/2024 – Continuare a curare |
The National Congress “Continuare a Curare” was a great success with more than 170 attendees! The event, sponsored by EpiCARE, various Italian scientific societies (LICE, SINPIA, SIN, SIP, etc.) and family organizations, aimed to address the needs of patients at the time of transition through a coordinated care model. It received significant attention and participation, highlighting the importance of addressing the challenges in transitioning care for patients with epilepsy and other neurological and psychiatric disorders. |
7/7/2024 – European Academy of Neurology |
The EAN Congress was a resounding success, drawing a total of 7092 attendees onsite and 1932 virtual participants, from 123 different countries. This diverse and vibrant gathering showcased the global reach and impact of the event. For more highlights and memories, you can visit the EAN Gallery. The next edition of the EAN Congress will be held in Seville from June 21st to 24th, 2025. |
4/6/2024 – The launch of two EJP RD/IRDiRC groundbreaking publications |
We proudly announce two ground-breaking publications that help pave the way for the future of research data sharing and information governance 1) Getting your DUCs in a row – standardising the representation of Digital Use Conditions https://www.nature.com/articles/s41597-024-03280-6 This publication reports a robust, standard data structure that addresses the complex challenge of responsibly sharing research data, healthcare records, biosamples, and other biomedical resources. The Digital Use Conditions (DUC) framework aims to streamline the management of these resources, while respecting applicable use conditions. The DUC data structure balances the need for clear rules with the flexibility required for diverse applications, ensuring that patient care and scientific discovery are advanced responsibly. 2) Common conditions of use elements. Atomic concepts for consistent and effective information governance https://www.nature.com/articles/s41597-024-03279-z This publication introduces a core lexicon of 20 essential terms, refined from an initial set of 76, that digitally represent standardized ‘use condition’ concepts. Devised in conjunction with biobanks and registries, especially within the European Joint Programme for Rare Diseases, this new concept list will underpin data and sample sharing activities that are both practical and widely applicable. Specifically, by creating standardized Sharing Policy Profiles, one can manage and share biological resources more effectively, supporting software, training, and real-world projects. Together, these publications describe a comprehensive approach to summarizing and managing use conditions for biomedical resources. The DUC schema offers a structured way to collect and standardize information, while the set of common use condition elements ensures consistency and clarity. By assigning permissions and restrictions, and specifying the scope and details of conditions, research activities can be better aligned with institutional missions, funding objectives, and regulatory requirements. |
29/5/2024 – MOOC: Free access until June 3! |
Thrilled to announce the launch of a comprehensive MOOC Health Data Ethics & Regulatory Frameworks in Rare Disease Research! Developed by Foundation For Rare Diseases, EURORDIS, EpiCARE and Gianni Benzi Foundation, our MOOC promises valuable insights and knowledge expansion. From May 6th to June 28th, join it for an enriching learning experience with expert educators on hand to address your queries. The access is free until June 3! Watch the trailer here! And join the course! |
16/5/2024 –Tuberous 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! |
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10/4/2024 – EPIPED Course – Girona
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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.
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25/3/2024 – “Managing Epilepsies in Crisis Situations – The Ukraine Experience”
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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.
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11/3/2024 – Jardin 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. |
