< Back JARDIN Online Training: How to Structure Patient Representation in National Reference Networks Nov 17, 2026 The session will bring together clinicians, health authorities, and patient representatives to: gain an overview of the JARDIN Blueprint and Toolkit for patient representation in NRNs; explore practical approaches to establishing meaningful patient involvement; and strengthen readiness for the implementation of sustainable patient partnership structures beyond JARDIN. If you are interested in participating, please complete the application form via the following link: https://redcap.link/application_patient_representation_in_NRNs . The deadline for applications is 22 October 2026 . Previous Next

< Back Open meeting European Network of Paediatric Research at EMA - 20 November Nov 20, 2025 Enpr-EMA Annual Open Meeting – 20 November 2025 The European Network of Paediatric Research at EMA (Enpr-EMA) will host its annual open meeting on Thursday, 20 November 2025, from 09:00 to 16:45 CET at EMA’s premises in Amsterdam, with a virtual option available. This event gathers networks and key stakeholders in paediatric clinical trials to exchange knowledge and strengthen collaboration. Registration is open until 31 October 2025 via the event webpage, where the draft programme is also available. The meeting will feature regulatory updates, innovations in trial design, and discussions on Good Clinical Practice modernisation, EU Clinical Trial Regulation, and the use of real-world data and AI. Participants will gain insights into Enpr-EMA’s priority activities and working groups. Learn more and register here . Previous Next

Achalasie-Selbsthilfe e.V. is a non-profit organisation whose purpose is the advancement of science and research in achalasia by organising educational and networking events for medical professionals and people affected with the disease. < Back Achalasie-Selbsthilfe e.V Achalasie-Selbsthilfe e.V. is a non-profit organisation whose purpose is the advancement of science and research in achalasia by organising educational and networking events for medical professionals and people affected with the disease. Previous Next

< Back Hôpital Antoine Béclère France This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Previous Next

< Back 4th ERICA GA & ERN Research Conference Dec 11, 2024 The ERICA 4th General Assembly & ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy . The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. ERICA Conference serves as a great opportunity to ‘meet and greet’ the active ERN research community, to present the research projects involving ERNs and to discuss the future of the ERN related Research. The deadline to submit abstracts is October 1, 2024. For more information please visit: https://erica-rd.eu/event/erica-ga-ern-research-conference/ Previous Next

< Back European Conference on Rare Diseases and Orphan Products (ECRD) 2026 – Save the Date! Oct 24, 2025 European Conference on Rare Diseases and Orphan Products (ECRD) 2026 – Save the Date! ERNICA is pleased to support the upcoming European Conference on Rare Diseases and Orphan Products (ECRD) 2026 , a major event bringing together the rare disease community across Europe. 📅 Save the Date: 3–4 June 2026 Join key stakeholders, researchers, and patient representatives to exchange knowledge and shape the future of rare disease policy and care. 🧬 Call for Poster Abstracts: The Call for Poster Abstracts is now open! Submissions are invited from patient groups, academics, healthcare professionals, and all other interested parties who have conducted research or projects related to rare diseases or public health. Find full submission details and guidelines here:👉 https://www.rare-diseases.eu/posters/ Previous Next

< Back ERNICA publications May 25, 2025 New ERNICA Publications Spotlight Quality Improvement and Collaborative Research Improving care for patients with rare inherited and congenital gastrointestinal anomalies demands strong international collaboration, something ERNICA is proud to champion. Fostering continuous quality improvement in a European rare disease network In a new paper co‑authored with colleagues from 10 European countries, we introduce the ERNICA Quality Cycle : a practical, iterative framework for continuous quality improvement across our network.📄 Read the full paper Collaborative Efforts in Pediatric Surgery: Lessons from European Randomized Controlled Trials A second article reflects on two ERNICA‑endorsed trials in pediatric surgery, detailing the challenges of running RCTs for rare congenital anomalies and offering recommendations to inform future studies.📄 Read the full article Together, these publications underscore ERNICA’s commitment to shared learning, evidence‑based practice, and better outcomes for children across Europe. Previous Next

< Back Semmelweis University, Institute of Genomic Medicine and Rare Disorders  Affiliated partner ERNICA Previous Next

< Back Helsinki Children's Hospital Finland This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Intestinal Failure Morbus Hirschsprung Omphalocele Short Bowel Syndrome Previous Next

ERNICA Scientific Committee The ERNICA scientific committee governs the scientific activity of ERNICA and maintains awareness of national and European research grant opportunities. Aim of the ERNICA Scientific Committee To provide overview of ongoing research and promote and facilitate research collaboration between ERNICA members and partners to enhance rare disease research. Responsibilities of the ERNICA Scientific Committee Creating an overall research strategy 2022-2027 Tracking research activities using the research survey Actively monitor potential grants (assisted by Research & Development Erasmus MC) Stimulate collaboration between member and partner centres Facilitate workstream meetings Assess if overall support can be provided (e.g. Data Sharing Agreement) ERNICA Scientific Committee Roel Bakx (co-Chair) r.bakx@amsterdamumc.nl Amsterdam UMC Beverly Power bev@cdhuk.org.uk CDH UK - patient representative Jan Deprest jan.deprest@uzleuven.be UZ Leuven Piergiorgio Gamba AOP Padua Francesca Russo (co-Chair) francesca.russo@uzleuven.be UZ Leuven Carmen Mesas Burgos carmen.mesas.burgos@ki.se Karolinska University Hospital Tomas Wester tomas.wester@sll.se Karolinska University Hospital Alberto Sgro alberto.sgro@aopd.veneto.it AOP Padua René Wijnen (ERNICA coordinator) r.wijnen@erasmusmc.nl Erasmus MC Mikko Pakarinen mikko.pakarinen@hus.fi Helsinki University Hospital Frederic Gottrand Frederic.gottrand@chru-lille.fr CHRU Lille

< Back AOP University of Padua Italy This centre has expertise for ERNICA in: Achalasia Congenital Diaphragmatic Hernia Congenital Enteropathies Congenital Esophageal Stenosis Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Intractable Diarrhea Of Infancy Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Short Bowel Syndrome Previous Next

< Back Marlinde van der Kamp Project Manager ERNICA/EPSA registry m.vanderkamp@dica.nl