Intestinal Failure care in Czech Republic Where is care provided? Care is provided in specialised centers within the national health insurance system. Psychological & Social Support Support available for patients and families includes: Psychologist Social worker Parental support by psychologists within hospitals Home Parenteral Nutrition (HPN) Covered by national health insurance Costs and reimbursement Treatment and HPN are fully covered by the national health insurance. School and education Support includes: Hospital teacher Patient organisations Život bez střeva

Intestinal Failure care in Sweden Where is care provided? Care is provided through the regional health service and specialized hospitals. Psychological & Social Support Support for patients and parents includes: Social workers in hospitals Similar support for parents Home Parenteral Nutrition (HPN) Covered by national and regional government Costs and reimbursement Fully government funded No additional applications required School and education Hospital school available, primarily used by younger children Many patients do not require long hospital stays Patient organisations A group exists, but is currently not active

ERNICA-eUROGEN Joint Flagship Surgical Training Programme Empowering the next generation of super-specialized surgeons in Europe Flagship Surgical Training Programme The Flagship Surgical Training Programme is a joint initiative of ERNICA and eUROGEN. It aims 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. This pioneering initiative strengthens succession planning, embeds training within cross-border care pathways, and improves continuity of care by fostering collaboration and experience-sharing through CPMS 2.0. How it works If you are an ERNICA or eUROGEN full member or affiliated partner and are planning a very rare or complex surgical intervention , you may apply to designate the case as a Flagship Training case , regardless of whether external assistance is needed. As part of the Flagship model, the treating centre can invite a travel team (including a senior surgeon and at least one junior consultant) to observe or assist in the surgery. This promotes learning through direct exposure to ultra-rare procedures while maintaining clear responsibility and ownership by the local team. Travel and accommodation for the visiting team can be funded by the programme , within the limits of European Commission's Unit Costs regulations . To ensure knowledge sharing and continuity of care: All cases are uploaded and discussed through CPMS 2.0., ideally before the operation. Post-operative follow-ups are required, allowing shared learning and outcome evaluation. CPMS panels should include senior experts and young consultants for educational value. Why it matters Historically, many complex procedures were performed by surgeons outside of Europe. While valuable, this approach did not build EU-based expertise or ensure appropriate patient follow-up. The Flagship Training Programme is designed to train the next generation of European surgeons, reduce dependence on external experts, and safeguard care continuity for ultra-rare surgical patients. Want to host a Flagship case? Contact us to get started: s.romangaldran@erasmusmc.nl (ERNICA) michelle.battye@radboudumc.nl (eUROGEN) Resources Full proposal, including detailed CPMS workflow and contacts (for both ERNICA and eUROGEN) Infographic with clickable links (for ERNICA diseases)

< Back AMORHI Caserta 2025 Monographic Conference on Hirschsprung Disease Nov 14, 2025 ERNICA participation at the AMORHI Caserta 2025 Monographic Conference on Hirschsprung Disease ERNICA will be actively represented at the upcoming Monographic Conference on Hirschsprung Disease , to be held in Caserta, Italy, from 14–16 November 2025 , organized by A.Mor.Hi. and supported by leading Italian and European clinical centers. The meeting will bring together specialists, researchers, and patient representatives to discuss advances in the diagnosis, surgical treatment, and long-term management of Hirschsprung disease. ERNICA experts, including Prof. Tomas Wester and Prof. Mikko Pakarinen , will contribute with presentations on ERNICA guidelines and ongoing research projects in Hirschsprung disease, highlighting the network’s central role in developing evidence-based care pathways and promoting collaborative research across Europe. Previous Next

< Back Call for input on two ongoing surveys Feb 10, 2026 Call for input on two ongoing surveys We are pleased to highlight two ongoing surveys of interest to the ERNICA community, both contributing to improved understanding and care of rare congenital conditions. We warmly encourage your participation and support in sharing these initiatives. EAT2 – Esophageal Atresia Survey EAT, the Esophageal Atresia Global Support Groups, has launched EAT2 , an international, patient-led questionnaire for individuals living with Esophageal Atresia and their parents or caregivers. Available in 14 languages, the survey aims to strengthen knowledge on long-term outcomes, and ERNICA members are kindly invited to help disseminate it widely among patients. Survey link: https://redcap.link/EAT2 ERNICA CDH Survey – Step 2 The ERNICA Working Group on Malformations of the Diaphragm invites physicians involved in congenital diaphragmatic hernia (CDH) care to participate in Step 2 of the ERNICA CDH Survey . This anonymous survey explores current CDH management practices and is open to clinicians from all relevant specialties. Survey link: https://ec.europa.eu/eusurvey/runner/CDHmanagementstep2 Previous Next

< Back IRCCS Ospedale Pediatrico Bambino Gesù Italy This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Intestinal Failure Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Previous Next

< Back Fondazione IRCCS CA'Granda Ospedale Maggiore Policlinico Italy This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Esophageal Atresia Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Previous Next

< Back CHU Paris - Hôpital Robert Debré France This centre has expertise for ERNICA in: Cipo - Chronic Intestinal PseudoObstruction Congenital Diaphragmatic Hernia Congenital Enteropathies Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Intestinal Failure Morbus Hirschsprung Omphalocele Short Bowel Syndrome Previous Next

Research ERNICA aims to facilitate and foster research initiatives across Europe and stimulate multi-centre collaboration. The ERNICA scientific committee governs the scientific activity of ERNICA and maintains awareness of national and European research grant opportunities. ERNICA has compiled a research catalogue based on the results of the ERNICA research survey, which presents common research areas of focus and intends to stimulate direct collaboration. Button ERNICA Scientific Committee ERNICA Research Catalogue Button

< Back CDH International Symposium 24-26 April 2024, Lille Apr 24, 2024 The next International Symposium on Congenital Diaphragmatic Hernia (CDH) will be held in Lille, France, from April 24 to 26, 2024. This biennial symposium brings together diaphragmatic hernia specialists from all over the world and from various medical fields, including: obstetrics - neontaology - pediatrics (gastro- & pneumo-pediatrics) - pediatric surgery - cardiology - nutrition - kynesitherapy - speech therapy – psychology. The symposium will cover the latest advances in understanding the disease and its management, while workshops will enable practitioners to discuss their respective practices. More information is available on the dedicated website: https://cdh2024.com Previous Next

Patient Journeys ERNICA patient representatives and clinicians have collaborated to develop patient journeys, carefully considering the experiences of the patient community. A patient journey describes a number of key stages in the patient's life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage. A Patient Journey promotes better understanding of a rare congenital disease and aims to support communication between clinicians, parents and patients. It gives an overview of symptoms, diagnosis and treatment and describes a number of key stages in the patient's life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage. The document lays out the steps of medical treatment as well as ideal support scenarios for patients and their families. The Patient Journey is written in understandable language for people without a medical background and includes links to further information and support. ERNICA PATIENT JOURNEYS Esophageal atresia under revision Intestinal Failure Hirschsprung's Disease Close Intestinal Failure patient journeys Patient Journey - Intestinal Failure in Short Bowel Syndrome (SBS) Patient Journey - Intestinal failure in Microvillus Inclusion Disease (MVID) Patient Journey - Intestinal Failure in Paediatric Intestinal Pseudo-Obstruction (PIPO) Additional country-specific information on patient organisations, peer support, psychological and emotional support, educational assistance during long-term treatment, and healthcare funding and reimbursement (including parenteral nutrition is available here . Close Hirschsprung's disease patient journey English French Italian English Ukrainian Ukrainian

CDH & ECMO hands-on course 2026 The next ERNICA CDH & ECMO paediatric surgery hands-on course 2026 took place on 29-30 January 2026, at the Erasmus MC in Rotterdam (the Netherlands). The ERNICA Pediatric CDH and ECMO Hands-on Course was endorsed by the European Paediatric Surgeons’ Association (EUPSA). The ERNICA Pediatric CDH and ECMO Hands-on Course, Rotterdam, Netherlands 29/01/2026 - 30/01/2026 , has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 13.0 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