Latest news
20/12/2024 – “Beyond Seizures: Advancing Holistic Care for Rare and Complex Epilepsies” Workshop (26-27th May 2025 – Alesund, Norway) |
The workshop, endorsed by EpiCARE, focuses on the challenges beyond seizure control, including neurodevelopmental, cognitive, mental health, and quality-of-life impacts. Organized by the “Beyond Seizures” EpiCARE Working Group, it promotes an interdisciplinary approach to understanding and addressing these complex issues in patients with Developmental and Epileptic Encephalopathies (DEEs) and Drug-Resistant Epilepsies (DRE), highlighting the profound effects on patients, families, and caregivers. The session schedule is now available for consultation. You can now register through this link. |
20/12/2024 – Our Trip to Rome for the ‘In Search of Lost Time 5’ EpiCARE Workshop |
The workshop “Challenging Focal Cortical Dysplasias & Autoimmune Diseases with Epilepsy,” endorsed by ERN EpiCARE, was a success with 156 participants, including professors and representatives from the pharmaceutical sector. It featured excellent multidisciplinary sessions adressing topics such as treatment approaches for autoimmune diseases with epileptic seizures, the complex challenges of Focal Cortical Dysplasias (FCDs), Advanced Therapeutic Medicinal Products, and more. Taking advantage of the workshop’s location in Rome, part of the EpiCARE management team dedicated Sunday morning, 15th December, to sharing their recent work, exchanging key ideas, and making key decisions for the future of our ERN. On Monday 16th, the EpiCARE Executive Committee meeting took place, with many members attending in person and others joining virtually. A big thank you to everyone for your valuable contributions. Your dedication makes meetings like this so productive. |
19/12/2024 – ERICA ERN Research Conference 2024 |
The ERICA ERN Research Conference 2024 was held in Udine (Italy) from December 11th to 13th, with EpiCARE represented on-site. Hosted by MetabERN, this inspiring event brought together leading experts from the rare diseases community. Alexis Arzimanoglou (EpiCARE coordinator) and Sébile Thaicha (EpiCARE Research Manager) were in attendance. At the conference, we presented the poster “Shaping the Future of Epilepsy Research in Europe: The ERN EpiCARE Priorities” and delivered presentations, including one by Sébile Thaicha, titled “Overcoming Challenges in Epilepsy Clinical Trials: The Role of the ECET – European Consortium for Epilepsy Trials (ECET)”. Additionally, we participated in a roundtable discussion on innovation. |
11/12/2024 – Launch of ERDERA 2025 Joint Transnational Call for Proposals + Webinar |
ERDERA is delighted to announce the official launch of our 2025 Joint Transnational Call for Proposals as of today, 10 December 2024. Sign up for the Joint Transnational Call Webinar! |
18/11/2024 – ILAE Europe Committee Meeting |
On Saturday, November 16th, it was a real pleasure for the ERN EpiCARE team to host at the Hospital San Juan de Déu, Barcelona the face-to-face meeting of the European Regional Board (ILAE-Europe) of the International League Against Epilepsy for a full day of constructive discussions. A special thank you to Siobhain SHANON and Gus EGAN for organising it. |
18/11/2024 – ERDERA Pre-Announces 2025 Joint Transnational Call for Proposals on Rare Disease Therapies |
The European Rare Diseases Research Alliance (ERDERA) is excited to announce the upcoming launch of its Joint Transnational Call (JTC) for Proposals 2025. Set to officially open on December 10, 2024, this call will invite research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”. This JTC will build upon the significant progress made by previous European Joint Programme on Rare Diseases (EJP RD) calls, with the aim of fostering international partnerships to develop innovative therapies for rare diseases. National and regional funding bodies from over 30 countries, including France, Belgium, Germany, Italy, and all Baltic states, have expressed interest in participating. Application Timeline The JTC 2025 will follow a two-stage submission process:
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6/11/2024 – Biomedical Data Science Symposium |
EpiCARE was present at the Biomedical Data Science Symposium at Paracelsus Medical University in Salzburg. Prof Eugen Trinka gave insights with a talk on ‘No clinical research without data science – lessons learned from EpiCARE’. The event was organised by EpiCARE members Georg Zimmermann and Martin Geroldinger and focused on the importance of biomedical data science in clinical research and joint actions. The use of AI, new methodological advances and joint cooperation projects were key topics of this conference. |
1/11/2024 – Webinaire ‘Managing Medically Complex Patients on a Ketogenic Diet’ |
The International Neurological Ketogenic Society (INKS), in collaboration with the Rare Epilepsies Reference Centre (CRéER) at Robert-Debré Hospital, is organizing a webinar on the management of medically complex patients following a ketogenic diet. The webinar will take place on November 18, 2024, at 17:00 CET and will be chaired by Professor Stéphane Auvin (Paris, France). Participation is free, but registration is required via this link. This event is organized in advance of the 9th Symposium on Ketogenic Therapies and the 5th European Meeting on GLUT1-DS, which will be held from September 16 to 19, 2025, in Issy-les-Moulineaux, France. |
30/10/2024 – International Online Course on Pathogenesis of Epilepsy |
Join the 3rd International Online Course on Pathogenesis of Epilepsy. Don’t miss this unique opportunity to deepen your understanding of epilepsy pathogenesis with top experts from around the world. The program will be conducted online. Applications are open until November 30, 2024, with the program set to start on February 27, 2025. To register, visit its webpage. |
17/10/2024 – International Symposium (February 2025) – Submit your abstract! |
On February 6th and 7th, 2025, the International Symposium: Neurodevelopmental Syndromes and Movement Disorders, endorsed by ERN EpiCARE, will be held in Barcelona (Spain). The aim of the event is to continue collaborative activities between professionals interested in neurodevelopmental syndromes and movement disorders. Sign up, and do not miss the chance to showcase your work at the International Symposium. |
15/10/2024 – EpiCARE’s 4thRare and Complex Epilepsy Academy |
Cordial invitation to EpiCARE’s 4thRare and Complex Epilepsy Academy under the scientific leadership of Prof. Eugen Trinka on Monday, October 21, 2024 (17:00-19:00). The RCEA Academy is a high quality and informative event series with the aim to meet the latest scientific findings in the field of rare and complex epilepsies and to enable a professional exchange. This time, the Academy will focus on the very important topic of Status Epilepticus in Developmental Epileptic Encephalopathies. We are already looking forward to your numerous participation, many questions and a lively discussion! Please find the registration link here and in the attached invitation: Herzliche Einladung zur 4. Rare and Complex Epilepsy Academy von EpiCARE unter der wissenschaftlichen Leitung von Prof. Eugen Trinka am Montag, den 21. Oktober 2024 (17:00-19:00). Die RCE Academy ist eine hochwertige und informative Veranstaltungsreihe mit dem Ziel, den neuesten wissenschaftlichen Erkenntnissen im Bereich der seltenen und komplexen Epilepsien gerecht zu werden und einen fachlichen Austausch zu ermöglichen. Dieses Mal dreht sich alles um das sehr wichtige Thema Status Epilepticus bei Developmental Epileptic Encephalopathies. Wir freuen uns schon auf Ihre zahlreiche Teilnahme, viele Fragen und eine angeregte Diskussion! Hier und in der beigefügten Einladung finden Sie den Registrierungslink. |
14/10/2024 – SAVE THE DATE/Abstracts welcome: EPNS Congress 8-12 July 2025> ICM – International Congress Center Munich |
Welcome to the 16th Congress of the European Paediatric Neurology Society (EPNS) where we classify our field into A for Acute, B for Brain, Health & Science and C for Chronic. We invite you to be part of this unique ABC format to learn, teach, meet, network and exchange ideas on an international stage. Learn more about the stimulating programme and SUBMIT your ABSTRACT (closes 15 January 2025). Any questions, we would be happy to hear from you: info@epns.info |
9/10/2024 – Register now! |
We are delighted to announce that Rome, the eternal city, will once again welcome us from December 16th to 18th 2024, for the 5th edition of the “In Search of lost time”. This highly specialized event will explore the intricate intersections between focal cortical dysplasias (FCDs), autoimmune diseases, and epilepsy. The workshop aims to bring together leading experts, clinicians, and researchers from across Europe to address the critical challenges in diagnosing, treating, and advancing our understanding of FCDs and autoimmune epilepsies. The nearly final program is now available and registrations are open (number of places limited). We would also like to remind you that 8 slots are reserved for abstract submissions by young epileptologists wishing to present their work in the session “Fostering the future”. If the abstract is selected, the registration fee will be waived. |
27/9/2024 – New Tool to Support EpiCARE Members with Clinical Trial Submissions in the CTIS |
The Working Group on Clinical Trials & Targeted Therapies, coordinated by Floor Jansen, Rainer Surges and Valentina De Giorgis, has developed a new tool to assist ERN EpiCARE members in submitting clinical trials through the Clinical Trial Information System (CTIS), the single point of entry for all clinical trials conducted within the European Union. We recognize that many investigators across the EU often face the challenge of submitting their trials to regulatory authorities on their own. To better support you, we have created these guidelines to streamline the process and provide clear, practical assistance. |
16/9/2024 – We were in Rome for the EEC! |
The European Epilepsy Congress in Rome was a success, with almost 3,000 attendees, over 130 sessions, and more than 400 speakers, chairs, and oral presenters. Alexis Arzimanoglou, EpiCARE Director, along with members of the EpiCARE Management team, Sébile Tchaicha, Belén Trebino, Johanna Van Hulle, and Laura Roig, were present at the congress. Alexis Arzimanoglou, together with other EpiCARE members such as Nicola Specchio, Isabella Brambilla, Morten I. Lossius, Ronit Pressler, and others, led interesting sessions which attracted much participation and interest. For example: “ERN EpiCARE and Clinical Trials in Children with Rare and Complex Epilepsies” or “Paediatric Epileptology. Video session: Seizure semiology in neonates and children”. Thanks to the ILAE, the organiser, we were fortunate to present EpiCARE and 4 other Neurological ERNs at a booth. For this reason, we invited Jolanda van Golde (ITHACA Project Manager), Elisa Devetta (MetabERN Coordination Office), and Houda Ali (Euro-NMD Project Manager) to present our projects. We received a large number of visitors at our booth, 423. A big thank you to everyone who stopped by to meet us, have a chat, and learn more about what the Neurological ERNs are doing. |
4/9/2024 – 2nd International Congress that ERN ReCONNET will organize in Prague from April 9th to 11th 2025 |
The Congress Committee and the ERN ReCONNET is glad to invite you to the 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases that will take place in Prague, Czech Republic, on April 9-11, 2025 (https://bit.ly/3Rdb3Xf).
We look forward to welcoming you in Prague! Save the date!
REGISTRATION IS OPEN. |
19/8/2024 – Innov4-ePiK |
Innov4-ePiK is an innovative project focused on advancing research in developmental and epileptic encephalopathies, coordinated at Institute Imagine of Paris by Pr. Rima Nabbout. |
2/8/2024 – 15th European Epilepsy Congress will be held Rome |
The European Epilepsy Congress (EEC), organised by the International League Against Epilepsy (ILAE), is approaching! It will take place in Rome from 7 to 11 September. Do not miss to register. You will find EpiCARE at booth number 423, along with the other 4 Neurological ERNs: ITHACA, ERN-RND, MetabERN and EURO-NMD. Here you have more information about the congress and the programme. |
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. |
