Epicare ERN

23/06/2026

🌟D2 Workshops - Designing for Disease
March 2 - 5, 2026 / Paris (France)
https://d2-workshop.com/

This workshop brings together leading healthcare professionals, clinician-scientists, translational researchers, and drug/therapy development experts with the primary aims of educating participants, building a cross-disciplinary understanding of therapeutic disease modification in DEEs and RGNDD, and empowering the next generation of young healthcare/scientific professionals entering the field. Through interactive sessions led by internationally recognized experts, the program provides in-depth education on the scientific, clinical, ethical, and regulatory dimensions of drug development - from mechanism-driven discovery to clinical trial design, and long-term outcome assessment.

22/06/2026

💻🧠 ­Through this Collaborative Clinical Research section, we share opportunities for collaborative clinical research initiatives, such as natural history studies. The main aim of this initiative, supported by the EpiCARE network, is to facilitate the recruitment of patient cohorts across epilepsy centres.

Please find the current calls:

"Swas in Phelan-Mcdermid Synrome", coordinated by Ludovica Pasca & Valentina De Giorgis.

"Metabolism in TSC", coordinated by Floor Jansen and Daoud Abu Husein.

Find out more about the collaborative genetic research opportunities and the current calls (with the general information).

18/06/2026

✨This Thursday morning, we successfully held the EpiCARE General Assembly 2026 in Leuven (Belgium), presented by Alexis Arzimanoglou. The meeting included an overview of the EpiCARE Members Performance Report 2025, highlighting key achievements and progress across the network. Updates were also provided regarding the Executive Committee and Coordination Team, as well as the activities carried out within EpiCARE Working Groups (WGs) and Special Interest Groups (SIGs).

The General Assembly concluded with two inspiring Scientific Lectures: Paul Triebkorn (INS - Institut de Neurosciences des Systèmes, Marseille) presented on "Brain Digital Twins in Epilepsy Research and Care" and Lode Lauwaert (KU Leuven) delivered a thought-provoking lecture on the "Ethics of Artificial Intelligence Use".

18/06/2026

The full EpiCARE Management Team in Leuven!

🔶Judit Alvarez (Spain) - Helpdesk
🔶 Martin Geroldinger (Austria) - Guidelines
🔶Nicola Lawrence (UK) -CPMS & Patient Empowerment Manager
🔶Alexis Arzimanoglou (Greece) -ERN Coordinator
🔶Belén Trebino Harrington (Spain) - Administrative and Finances Manager
🔶Sébile Tchaicha (France) - Research Manager
🔶Laura Roig (Spain) - Communication Manager
🔶Johanna Van Hulle (Belgium) - Registry and Data Manager

17/06/2026

🤝Today is the Working Groups Meeting day. All the meeting rooms at The Faculty Club are full of EpiCARE members from many different countries across Europe attending the sessions, presented by the leaders. 🗣️We are having very interesting presentations, discussions, and debates.
Your collaboration, contributions, and active participation are essential to the success of the ERN. Thank you all for your commitment and engagement.

16/06/2026

🧡 The EpiCARE Annual Meeting 2026 has officially begun in Leuven, Belgium. EpiCARE members will be staying in this welcoming city until Friday, gathering at the beautiful Faculty Club Leuven conference centre. This morning, we held the Management Team Meeting, and we are now taking part in the Executive Committee Meeting.

We’ll keep you updated on all the latest news through our social media channels. Stay tuned!

11/06/2026

📢 New publication!

https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2026.1822461/full

We are pleased to contribute to this new publication in Frontiers in Public Health highlighting the role of ERNs in supporting genomic newborn screening and ensuring rapid access to specialised care for children with rare diseases.

This work, developed within the Screen4Care project, proposes an innovative framework connecting genomic newborn screening programs with ERN expertise across Europe to improve early diagnosis, referral pathways and access to treatment.

👏 Congratulations to all authors and partners involved in this important collaborative effort.
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Rare diseases (RDs), affecting fewer than 5 people per 10,000, present unique challenges to usual care pathways due to their unique characteristics: rarity a...

09/06/2026

Register now for this June’s webinar! Free, online, and featuring leading experts in the field. 🌟 🧠

https://us06web.zoom.us/webinar/register/WN_SO-7_h8OTgKjALnLz4RYlw #/registration

02/06/2026

🍂 Registration now open: EPNS Research Meeting 16-17 October 2026, Thessaloniki, Greece

"Join us in Thessaloniki for the unique European Paediatric Neurology Society (EPNS) Research Meeting 2026, featuring plenary lectures from leading experts and interactive sessions, including two break-out sessions with five parallel working groups covering Autoimmune & Infectious Diseases, Developmental Neurology & Neurogenetics, Epilepsy, Fetal & Neonatal Neurology, Leukodystrophies, Movement Disorders, Neurometabolic, and Neuromuscular disorders."

Registration is now Open on a 1st come/1st served basis to paediatric neurology researchers at all career stages—from trainees and PhD students to senior experts—this meeting offers an excellent opportunity for collaboration and discussion, with the potential to develop and strengthen future research collaborations.

For full details: https://www.epns.info/epns-research-meeting-2026/
Any questions: [email protected]

EPNS - European Paediatric Neurology Society

REGISTRATION IS OPEN first come/ first served General information The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology, the meeting brings together leaders in the field, active researchers and young fellows who are interested to join or t...

01/06/2026

We invite you to review our Calls for Collaborative Genetic Research on the specific webpage we have at EpiCARE website 💫