< 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

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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. < Back 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. Previous Next

Sexual Support How can an anorectal malformation (anal atresia) or Hirschsprung's disease affect sexuality? what ban be different than in others without these conditions? What can we encouter and how can you deal with it? You can find answers to these types of questions right here. ERNICA has developed a dedicated sexual support website aimed at assisting patients living with anorectal malformation and/or Hirschsprung's disease, along with their parents and healthcare professionals involved in their care. This website offers comprehensive answers to your questions about intimacy, sex, sexuality and sexual development. The website's content, originally in Dutch, has been translated into English and adapted (where relevant) for an international audience. The orginal version of the website (in Dutch) was developed by project group 'SO' (Seksuele Ondersteuning anorectale malformatie & ziekte van Hirschsprung) in close collaboration with patients and specialist practitioners in the Netherlands. See research paper by Violet Petits-Steeghs et al. (2020) for more information on the project. Do you want to help us improve this website or give feedback? ERNICA and eUROGEN are collecting anonymous information from website users to evaluate the use, applicability, expected empowerment effect and experience of this sexual support website tool on healthcare professionals, patients, parents and other relations on an international level. This evaluation aims to identify areas where the website can be improved to ensure it is fit for purpose and meets the needs of users. It may also help to shape new resources or initiatives in the future. Find out more here .

< Back Odense University Hospital Denmark This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Congenital Enteropathies Duodenal And Small Bowel Atresia Esophageal Atresia Familial Adenomatous Polyposis Gastroschisis Intestinal Polyposis Syndrome Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Rare Pancreatic Diseases Short Bowel Syndrome Previous Next

< Back University of Leipzig Germany This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Esophageal Atresia Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Previous Next

< Back University Medical Center Ljubljana Affiliated partner ERNICA Previous Next

< Back Universitätsklinikum Hamburg-Eppendorf Germany This centre has expertise for ERNICA in: Achalasia Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Previous Next

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. < Back 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. Previous Next

< Back ERNICA Artificial Intelligence Session Jul 22, 2025 ERNICA Artificial Intelligence Session On Wednesday afternoon , ERNICA hosted its inaugural Artificial Intelligence Session , marking a significant step toward exploring the role of AI in rare disease networks. Sebastian Tschauner opened the session with an insightful overview of current advancements in AI. Rosa Verhoeven followed with a thought-provoking discussion on practical applications, including how AI can support complex ethical decision-making. Holger Till, co-lead of the ERNICA AI Taskforce, concluded the session by presenting key findings from the recent ERNICA AI Survey. The event drew a full room of engaged onsite participants, along with remote attendees, and sparked lively and meaningful discussions. You can watch the recording of the AI session here . Previous Next