ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. Improving care for rare inherited and congenital gastrointestinal anomalies ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies Read More Information for patients and families Within our network, we have patient representatives that represent certain patient communities. Besides, we work on several activities for the patient and family community. Learn More Information for clinicians Within our network, clinicians work towards standards of care, are provided with training opportunities and can make use of our clinical patient management system. Learn More Rare diseases covered by ERNICA Esophageal Diseases Intestinal Diseases Intestinal Failure Gastroenterological Diseases Malformations of the diaphragm and Abdominal Wall Defects Latest News February 15, 2027 at 12:00:00 PM EURORDIS Black Pearl Awards 2027: Registrations Now Open Read More February 11, 2027 at 12:00:00 PM ERNICA CDH & ECMO Paediatric Surgery Hands-On Course 2027 Read More November 17, 2026 at 3:00:00 PM JARDIN Online Training: How to Structure Patient Representation in National Reference Networks Read More Upcoming events Expert centres in Europe ERNICA is a network of expert multi-disciplinary professionals from specialised healthcare providers (HCPs) across Europe (‘ERNICA full members’). ‘Affiliated partner’ hospitals and their multi-disciplinary professionals also form part of the network. ERNICA includes 52 European Health Care Providers (HCPs) from 21 EU Member States, involving 39 HCP full members and 13 Affiliated partners. Learn More

ERNICA News & Events This page contains ERNICA events and ERN-related activities. Click here to read our newsletters Feb 15, 2027 EURORDIS Black Pearl Awards 2027: Registrations Now Open Read More Feb 11, 2027 ERNICA CDH & ECMO Paediatric Surgery Hands-On Course 2027 Read More Nov 17, 2026 JARDIN Online Training: How to Structure Patient Representation in National Reference Networks Read More Nov 11, 2026 ERNICA Webinar on Recurrent & Persistent Tracheoesophageal Fistula Read More Sep 30, 2026 ERNICA Webinar on Intractable Fecal Incontinence Read More Sep 3, 2026 ERNICA Webinar on Hirschsprung Disease: The Failing Pull-Through Read More Sep 2, 2026 New ERNICA Publication Artificial Intelligence Competencies and Educational Needs Among ERNICA Members Read More Sep 1, 2026 2026 call for applications: Affiliated Partner within the European Reference Networks Read More Aug 19, 2026 ERNICA Webinar on Intestinal Malrotation: Who really needs surgery? Read More Jul 21, 2026 Survey on Practice Patterns and Perception of Pediatric Surgeons on Nutrition Read More Jun 2, 2026 ERNICA Annual Meeting 2027 Postponed Read More May 19, 2026 ERNICA 10th annual meeting Read More Feb 10, 2026 Call for input on two ongoing surveys Read More Jan 21, 2026 Webinar: Medical Device Shortages & Regulatory Constraints Read More Jan 20, 2026 ERN 2026 HCP Data Collection – Webinar recording now available Read More Jan 14, 2026 Webinar ''Quality of Life and Mental Health of Healthcare Providers.'' Read More Dec 30, 2025 European Conference on Rare Diseases and Orphan Products (ECRD) 2026. Read More Dec 18, 2025 CDH International Symposium - 13 - 15 April, Leuven Read More Dec 16, 2025 ERNICA-EUPSA study on Healthcare Professionals’ Use and Preferences for PROMs Read More Nov 20, 2025 Open meeting European Network of Paediatric Research at EMA - 20 November Read More

< Back EURORDIS Black Pearl Awards 2027: Registrations Now Open Feb 15, 2027 Registration is open for the EURORDIS Black Pearl Awards 2027 ✨ Join the rare disease community for an unforgettable evening celebrating the people and organisations going the extra mile to create change. From inspiring stories and achievements to live performances and opportunities to connect with others across the community, the Black Pearl Awards are a chance to celebrate just how much can be achieved when we work together. 💜 #EURORDISAwards2027 📅 15 February 2027 📍 Brussels or online ✨ Register here ✨ Previous Next

Meet the Team The ERNICA network is coordinated from the Erasmus Medical University Centre in Rotterdam, the Netherlands. Therefore, the coordinator, project managers, and supporting departments are all located in the Erasmus MC. Patients and/or families looking to access clinical support from ERNICA should speak to their local healthcare providers. For other network-related queries, please contact the project managers (details below). Prof. dr. René Wijnen Coordinator for ERNICA r.wijnen@erasmusmc.nl / ern-ernica@erasmusmc.nl Olivia Spivack Implementation Coordinator o.spivack@erasmusmc.nl Rebecca Pulvirenti CPMS Helpdesk cpmshelpdesk@ernica.ern-net.eu Sara Roman Galdran Project Manager ERNICA s.romangaldran@erasmusmc.nl Willemijn Irvine Guideline Methodologist w.irvine@erasmusmc.nl Marlinde van der Kamp Project Manager ERNICA/EPSA registry m.vanderkamp@dica.nl Alice Beck Project Manager ERNICA a.beck@erasmusmc.nl Martine Joseph CPMS Helpdesk martine.joseph@aopd.veneto.it Noa Ouwehand EPSA Project Manager n.ouwehand@dica.nl

Item List AFMAH AFMAH is the French patient organization dedicated to supporting individuals with Hirschsprung's Disease (HD) by providing guidance on treatment, follow-up care, and the psychosocial aspects of the condition. Read More APEHDia APEHDia, the main French charity dealing with Congenital Diaphragmatic Hernia (CDH), works very closely with the French scientific and medical community, provides emotional and financial support to families with facing a CDH diagnosis and encourages and funds research. Read More 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. Read More Amorhi The Italian Association of Hirschsprung's Disease A.Mor.Hi was established by parents, professionals and volunteers to help parents deal with and resolve problems related to Hirschsprung's disease, support scientific research and raise awareness. Read More CDH Sverige (Sweden) CDH Sverige is a national non-profit organisation that aims at improving life conditions for children, youngsters and adults living with Congenital Diaphragmatic Hernia (CDH) as well as their relatives, by, for instance, spreading knowledge and a building a CDH community in Sweden. Read More CDH UK CDH UK is a modern charity made up of experts providing complimentary care to patients and their families in the form of information, emotional and practical support and by conducting, encouraging and funding research. Read More EOS network -Eosinophilic diseases EOS Network is a British charity whose mission is to ensure that every person with an Eosinophilic Gastrointestinal Disease receives a prompt, accurate diagnosis, the right treatment for them, and support to live with their condition. Read More Esophageal Atrasia Global Support Group EAT is an international federation of family support groups which focus on sharing experiences, disseminating information and raising awareness of the rare congenital condition of Esophageal Atresia (EA). Read More GUTS UK Guts UK is the only UK charity that covers the digestive system from top to tail: the gut, liver and pancreas. Their mission is to provide expert information, raise public awareness and fund life-changing and life-saving research. Read More NEC UK NEC U.K. is the first charity in the UK exclusively for the condition Necrotising Enterocolitis (NEC).It is parent led and primarily offers support to families affected by the condition at any stage of their journey. Read More Platform CHD PlatformCHD is an association that helps people in the Netherlands and Belgium who are affected by Congenital Diaphragmatic Hernia (CDH) by organising national and international conferences and fundraising events, acting as a resource and promoting research on the broader aspects of CDH. Read More SoMA SoMA e.V. is the German patient organisation that helps with questions about treatment, follow-up and psychosocial aspects of Anorectal Malformation (ARM), Hirschsprung's Disease (HD) and Cloacal Exstrophy. Read More

< Back General Hospital of Vienna Affiliated partner ERNICA Previous Next

< Back Marseille University Hospital Timone France This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Eventration Of Diaphragm Gastroschisis Intestinal Failure Morbus Hirschsprung Omphalocele Short Bowel Syndrome Previous Next

< Back Webinar ''Quality of Life and Mental Health of Healthcare Providers.'' Jan 14, 2026 Don’t miss our upcoming ERNICA webinar this Wednesday (14 January, 16:00 CET)! We’ll explore Quality of Life and Mental Health of Healthcare Providers with Isabelle Streng , Chartered Clinical Psychologist at Erasmus MC. During this session, we will explore topics such as ambition, collegiality, career planning, stress management, and work-life balance. 👉 Register here: https://lnkd.in/ee-C4S5z Previous Next

< Back ERNICA webinar on Quality of Life and Mental Health of Children with Gastroschisis & their families Nov 14, 2025 We are pleased to announce that the recording of the ERNICA webinar “ Quality of Life and Mental Health of Children with Gastroschisis & their families ” is now available on YouTube. Did you miss the live session, or would you like to revisit the presentations? You can now watch the full webinar at your convenience. Watch the webinar here: https://youtu.be/VbeHtLDw1hU Please feel free to share the link within your networks to reach clinicians, researchers, and families across Europe. Previous Next

< Back Amsterdam UMC Netherlands This centre has expertise for ERNICA in: Cipo - Chronic Intestinal PseudoObstruction Esophageal Atresia Intestinal Failure Morbus Hirschsprung Necrotizing Enterocolitis Sacrococcygeal teratoma Short Bowel Syndrome Previous Next

< Back Save the date: Next Quality of Life webinar - 3 September Sep 3, 2025 ERNICA Research Collaboration Webinar: 3 September, 16:00-17:00 (CEST) 'Quality of life and Mental Health in Children with Gastroschisis and their families' This session will bring together leading experts to present recent research findings and clinical insights on the long-term outcomes for children born with gastroschisis. Matilda Bräutigam will introduce gastroschisis and. present a study on gastrointestinal quality of life, followed by Andre Rietman, who will discuss his team’s research on health status and quality of life in children and parents, including a recent ERNICA review on mental health. Finally, Ahmed Nasr and Meagan Wiebe will present a systematic review and meta-analysis on quality of life after surgical treatment. The session will end with audience questions and will be hosted by Dr. Michaela Dellenmark Blom, associate professor, is a researcher at Sahlgrenska Academy, Gothenburg University, Gothenburg and Karolinska Institutet, Stockholm, Sweden. Speakers: Matilda Bräutigam, senior consultant pediatric surgery at the Department of Pediatric Surgery, Queen Silvia Children’s Hospital in Gothenburg, Sweden. Andre Rietman, PhD, mental health psychologist at the department of pediatric surgery at the Erasmus Medical Centre, Sophia Children’s Hospital in Rotterdam, the Netherlands. Ahmed Nasr , MD MSc, interim Chair at the Department of Surgery and Division Chief at the Department of Pediatric Surgery, University of Ottawa, Children’s Hospital of Eastern Ontario (CHEO), Canada. Meagan Wiebe, Pediatric Surgery Fellow at Children’s Hospital of Eastern Ontario (CHEO) / University of Ottawa, Canada. You can register here Previous Next

AFMAH is the French patient organization dedicated to supporting individuals with Hirschsprung's Disease (HD) by providing guidance on treatment, follow-up care, and the psychosocial aspects of the condition. < Back AFMAH AFMAH is the French patient organization dedicated to supporting individuals with Hirschsprung's Disease (HD) by providing guidance on treatment, follow-up care, and the psychosocial aspects of the condition. Previous Next