< Back ERNICA Webinar on Intestinal Malrotation: Who really needs surgery? Aug 19, 2026 ERNICA Webinar on Intestinal Malrotation: Who really needs surgery? - Wed, Aug 19, 2026 4:00 PM - 5:00 PM CEST Intestinal malrotation spans a wide clinical spectrum, from incidental findings to life-threatening midgut volvulus. Deciding who truly needs surgery remains a topic of ongoing debate. This webinar takes a multidisciplinary approach, bringing together the perspectives of paediatric surgeon, Janne Suominen , and paediatric radiologist, Aurelio Secinaro , to explore the diagnostics and treatment of intestinal malrotation. You can register via here . We look forward to having you attend the event! Previous Next

< Back Alice Beck Project Manager ERNICA a.beck@erasmusmc.nl

< Back Hospices Civils de Lyon France This centre has expertise for ERNICA in: Achalasia Esophageal Atresia Rare Pancreatic Diseases Previous Next

< Back Centre hospitalier de Luxembourg Affiliated partner ERNICA Previous Next

Training and Education ERNICA develops and implements online and face-to-face educational/training activities targeted towards medical professionals, patients and families. Through its cross-border training activities, ERNICA aims to build capacity and increase access to expertise at EU level. TRAINING AND EDUCATIONAL ACTIVITIES Flagship programme The Flagship Surgical Training Programme is a joint initiative of ERNICA and eUROGEN, aimed at building sustainable expertise in highly complex and ultra-rare surgical procedures across Europe by increasing high-potential young consultants' exposure to real surgical cases of high complexity and educational value. Click here for more information. Webinars ERNICA also engages in live joint educational webinars with eUROGEN, EUPSA and Research Collaboration Webinars. You can find recorded versions of these webinars on our YouTube channel. . The joint webinars with eUROGEN are specifically focused on ARM and Hirschsprung's Disease ('colorectal series'). For more information on registration click here . Courses ERNICA organises hands-on colorectal and CDH surgical training courses, with support from ERNICA member centre Radboud MC, EUPSA and eUROGEN. Please find out more here . Other eductional activities ERNICA has set up its own YouTube channel for the dissemination of relevant e-learning and video content for healthcare professionals and/or patients and their families. . ERNICA has also organised joint educational sessions with supporting partners, such as the ERNICA-ESPGHAN Educational Session on Feeding, Nutrition and Growth in Esophageal Atresia Patients. Other educational activities ERNICA-ESPGHAN Educational Session on Feeding, Nutrition and Growth in Esophageal Atresia Patients ERNICA Artificial Intelligence Session

< Back Flagship Surgical Training Programme - Submit your case! Aug 26, 2025 Flagship Surgical Training Programme ERNICA and eUROGEN have jointly launched the Flagship Surgical Training Programme to strengthen expertise in ultra-rare and highly complex congenital surgical care across Europe. The initiative enables centres treating very rare or complex cases to host “Flagship” surgeries, where high-potential junior consultants can join as part of a travelling team. All cases are discussed in the Clinical Patient Management System (CPMS 2.0.), with structured pre- and post-operative panels to ensure shared learning and follow-up. This programme is a unique opportunity to build succession planning, secure continuity of care, and prepare the next generation of rare disease surgeons. Learn more and submit your case: https://www.ern-ernica.eu/flagship-training-programme Previous Next

< Back EURORDIS ERN patient partnership framework development Nov 6, 2023 PATIENT PARTNERSHIP IN THE ERNS The new EURORDIS Patient Partnership Framework describes partnership in the ERNs as a relationship between healthcare professionals and people living with a rare disease, or their carers, which informs decision-making. The key to achieving true, systematic patient partnership within the networks is involving these rare disease community members as equal partners in all ERN domains. Read more: 2023_Eurordis_PatientPartnershipFramework .pdf Download PDF • 1.05MB Previous Next

< Back Olivia Spivack Implementation Coordinator o.spivack@erasmusmc.nl

CDH & ECMO hands-on courses ERNICA organises hands-on CDH and ECMO surgical training courses. We are pleased to announce that the next ERNICA CDH & ECMO paediatric surgery hands-on course is scheduled for 11-12 February 2027 in Stockholm, Sweden. This course is specifically tailored for surgical trainees and early-career pediatric surgeons who wish to strengthen their skills in the management of CDH. It is not intended for experienced professionals but rather for those at the beginning of their careers, who will benefit most from focused, hands-on training. By the end of the course, participants will have enhanced their technical confidence and gained valuable insights into the complexities of CDH care, in close connection with international experts in the field. Programme: Please find the programme here: Registration Details: The registration cost is 2 000 SEK (excl. 25% VAT). The cost includes a dinner on 11 February 2027. Places are limited. Regster now to secure your spot!. Past courses: Find the programme and evaluation reports of the previous editions here: Past courses Programme 2027 Register now Course faculty René Wijnen, Erasmus MC Carmen Mesas Burgos, Karolinska University Hospital Horst Daniels, Radboud UMC Katrin Zahn, Universitätsmedizin Mannheim

CDH & ECMO hands-on course 2025 The ERNICA CDH & ECMO paediatric surgery hands-on course 2025 took place on 29-30 January 2025, at the Erasmus MC in Rotterdam (the Netherlands). This specialised educational course is designed for senior residents, fellows and junior paediatric surgeons. This CDH & ECMO paediatric surgery hands-on course has been endorsed by the European Paediatric Surgeons’ Association (EUPSA). The ERNICA Pediatric CDH and ECMO Hands-on Course, Rotterdam, Netherlands 29/01/2025 - 30/01/2025 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 11.5 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in the educational activity. Programme Evaluation Report Course faculty René Wijnen, Erasmus MC Carmen Mesas Burgos, Karolinska University Hospital Horst Daniels, Radboud UMC Katrin Zahn, Universitätsmedizin Mannheim

Intestinal Failure care in Germany Where is care provided? Care for intestinal failure depends on the region and the individual patient. Treatment is typically provided in specialised university hospitals with nutrition and rehabilitation teams. Psychological & Social Support No psychological support is consistently available No formal parental psychological support Home Parenteral Nutrition (HPN) Fully funded by the national health service Costs and reimbursement Reimbursed through health insurance Supplies, equipment and training depend on the insurer and region School and education Support varies and depends heavily on the patient’s situation. Patient organisations Kise e.V.

Organisation and Structure ERNICA has a governance structure that gives healthcare professionals and organisations involved in the care and research of scare inherited and congenital malformations the opportunity for continuous exchange of knowledge and best practices. The ERNICA coordination office is based at Erasmus University Medical Center, Rotterdam, The Netherlands. Coordinator : Prof. dr. René Wijnen Project managers: Sara Roman Galdran and Alice Beck ERNICA has a governance structure that gives healthcare professionals and organisations involved in the care and research of scare inherited and congenital malformations the opportunity for continuous exchange of knowledge and best practices. Exchange of best practices is ensured via both vertical (work streams and working groups) and horizontal organisational structures (work packages). The work steams are divided into different working groups . The rationale for having these working groups is to allow for focused projects, and collaboration with patient support groups on a disease- specific level. Workstreams and working groups are co-led by ERNICA healthcare professionals and patient representatives where possible. ERNICA coordination team Malformations of digestive sytem Work streams Malformations of the diaphragm and abdominal wall Esophageal diseases Intestinal diseases Intestinal failure Gastroenterological diseases Malformations of the diaphragm Abdominal wall defects Disease-specific working groups Fetal medicine (working group) Quality of life (working group) Transition and adult care (working group) Implementation (central support team) Nutrition (working group) Transversal working groups WP1: Coordination WP2: Dissemination WP3: Evaluation WP4: Healthcare and CPMS WP5: Registries, data management and analysis WP6: Training and education WP7: Clinical guidelines / clinical decision making tools WP8: Capacity builting and best practices sharing for Ukrainian competent authorities and healthcare units WP9: Other activities for Ukrainian competent authorities and healthcare units WP10: Research facilitation WP11: Networking Cross-disease workpackages ERNICA board 1 representative from each ERNICA (full) member Up to 6 patient representatives (/ePAG advocates) Full member hospitals Affiliated partner hospitals Other supporting partners (E.g. Scientific / Professional societies) ePAG (associate partner organisations & their ePAG advocates Supporting partners * Patient organisations registered in Europe that do not have a designated representative in the ePAG. * Patient organisations registered and operating outside of Europe * Individual patients or family members * Social media-based patient support groups