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. < Back 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. Previous Next

< Back Willemijn Irvine Guideline Methodologist w.irvine@erasmusmc.nl

< Back Hôpital Beaujon France This centre has expertise for ERNICA in: Cipo - Chronic Intestinal PseudoObstruction Congenital Enteropathies Intestinal Failure Short Bowel Syndrome Previous Next

< Back ERN 2026 HCP Data Collection – Webinar recording now available Jan 20, 2026 The recording and presentation slides from the ERN 2026 HCP Data Collection session held on 8 January 2026 are now available. Participants and interested colleagues can review the session to revisit key updates, guidance, and next steps related to the 2026 data collection process. The slides used in the presentation The recording of the event. Previous Next

< Back Survey on Practice Patterns and Perception of Pediatric Surgeons on Nutrition Jul 21, 2026 Survey on Practice Patterns and Perception of Pediatric Surgeons on Nutrition The EUPSA Network Office, in collaboration with the ERNICA Nutrition Working Group, has launched a survey to explore practice patterns and perceptions regarding the role of nutrition in pediatric surgery. The results will help improve understanding and support the development of optimal nutritional care for pediatric surgical patients. Please access the survey here: EUPSA Network Office – ERNICA Survey on the Surgical Management of Pediatric Inflammatory Bowel Disease Previous Next

< Back Children's Clinical University Hospital Affiliated partner ERNICA Previous Next

Diagnoses covered in ERNICA The diagnoses of rare diseases that are covered within ERNICA are all considered to be rare inherited and congenial (digestive and gastrointestinal) anomalies. There are two diagnostic groups ("Work streams") covered by ERNICA. 1. Malformations of the digestive system: with working groups for Esophageal Diseases, Intestinal Diseases, Intestinal Failure, and Gastroenterological Diseases 2. Malformations of the diaphragm and abdominal wall: with working groups for Malformations of the diaphragm and Abdominal Wall Defects Please click on the button below to find about more about the disease we represent. Esophageal Diseases Intestinal Diseases Intestinal Failure Gastroenterological Diseases Malformations of the diaphragm and Abdominal Wall Defects

European Reference Networks European Reference Networks (ERNs) are networks of expert healthcare professionals from specialised healthcare providers across Europe. The networks seek to pool together the expertise available across Europe and concentrate knowledge and resources on rare and/or complex diseases. There are 24 ERNs, each focusing on a particular rare disease area. When and why were ERNs launched? The first ERNs were launched in March 2017 in response to a European Commission call which featured as part of the ‘Third programme for the union's action in the field of health’. Their initiation and development emerged from EU legislation – Directive 2011/24/EU on patients’ rights in cross-border healthcare. This directive recognises the value of voluntary cooperation between healthcare centres for specialised care. What are European Reference Networks and their goals? Pool together knowledge & expertise By pooling knowledge and expertise across the EU, ERNs will facilitate access to diagnosis, treatment and provision of affordable, high-quality and cost-effective healthcare in these areas. Altogether, this will improve diagnosis and treatment capacities where expertise is rare. Serve as focal points of highly-specialised care ERNs will serve as focal points for medical training and research, information dissemination to other parts of the health system, and healthcare evaluation. Improve high-quality specialised care The aim is to benefit patients by improving high-quality specialised care, through better co-operation and greater economies of scale, from which health systems benefit as well. Diagnosis and treatment are improved by developing and sharing clinical guidelines and patient information. Work on research and innovation for rare diseases The ERNs help maximise the speed and scale at which innovation in medical science and health technologies is incorporated into healthcare provision. For this purpose, ERNs work in research and joint-partnership networks. The European Reference Networks The first 24 ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. ERN BOND - European Reference Network on bone disorders - Factsheet - Website ERN CRANIO - European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders - Factsheet - Website Endo-ERN - European Reference Network on endocrine conditions - Factsheet - Website ERN EpiCARE - European Reference Network on epilepsies - Factsheet - Website ERKNet - European Reference Network on kidney diseases - Factsheet - Website ERN-RND - European Reference Network on neurological diseases - Factsheet - Website ERNICA - European Reference Network on inherited and congenital anomalies - Factsheet ERN LUNG - European Reference Network on respiratory diseases - Factsheet - Website ERN Skin - European Reference Network on skin disorders - Factsheet - Website ERN EURACAN - European Reference Network on adult cancers (solid tumours) - Factsheet - Website ERN EuroBloodNet - European Reference Network on haematological diseases - Factsheet - Website ERN eUROGEN - European Reference Network on urogenital diseases and conditions - Factsheet - Website ERN EURO-NMD - European Reference Network on neuromuscular diseases - Factsheet - Website ERN EYE - European Reference Network on eye diseases - Factsheet - Website ERN GENTURIS - European Reference Network on genetic tumour risk syndromes - Factsheet - Website ERN GUARD-HEART - European Reference Network on diseases of the heart - Factsheet - Website ERN ITHACA - European Reference Network on congenital malformations and rare intellectual disability - Factsheet - Website MetabERN - European Reference Network on hereditary metabolic disorders - Factsheet - Website ERN PaedCan - European Reference Network on paediatric cancer (haemato-oncology) - Factsheet - Website ERN RARE-LIVER - European Reference Network on hepatological diseases - Factsheet - Website ERN ReCONNET - European Reference Network on connective tissue and musculoskeletal diseases - Factsheet - Website ERN RITA - European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases - Factsheet - Website ERN TRANSPLANT-CHILD - European Reference Network on Transplantation in Children - Factsheet - Website VASCERN - European Reference Network on Rare Multisystemic Vascular Diseases Fa ctsheet - Website Want to learn more about ERNs? Information folders have been produced by the European Commission in several languages. Access the information brochure in your language via the button below. Bulgarian Croatian Czech Danish French German Greek Hungarian Polish Portugese Romanian Slovak Dutch English Estonian Finnish Italian Latvian Lithuania Maltese Slovenian Spanish

ERN Evaluation or AMEQUIS This is part of the AMEQUIS framework (Assessment, Monitoring, Evaluation and Quality Improvement System), which aims to ensure that ERNs remain responsive to the needs of the rare disease patient community, deliver on their objectives, and improve their performance over time. BACKGROUND & INFORMATION In accordance with the Implementing Decision 2014/287/EU, an independent evaluation body was appointed to evaluate the European Reference Networks (ERNs) and their members 5 years after their initial approval, in order to determine the worth and significance of the work produced by the networks. Specifically, the evaluation set out to assess: Whether ERNs and their members (HCPs) continue to fulfil the requirements set out in the EU law To what degree the ERNs have achieved the original objectives set out in their application The outcomes and performance of the ERN and the contribution of each HCP member Achievement of the objectives and quality of the deliverables produced under the ERN grants ... in order to judge the following: Structure: How is the ERN covering the areas it stated it would (including geographical, diseases and conditions, and patient population). Maturity : At what stage of development is the network regarding its purpose, governance, leadership, learning and sustainability; level of integration into national health systems. Activity : To what degree has the ERN completed the activities it planned to perform; scale and ambition of the achievements. Impact : What has been the value added to the patients' experience, both receiving services with each member, and their pathway through the network; impact locally, use of ERN tools ERNICA EVALUATION RESULTS We are happy to report that ERNICA as a network received a SATISFACTORY final evaluation result, with no need for an improvement plan. Grand total score: 101/104 (97,12%) Score for core measurable elements: 59/60 (98,33%) You can read an overview of ERNICA's key achievements here .

< Back Universitätsmedizin Mannheim Germany This centre has expertise for ERNICA in: Achalasia Congenital Diaphragmatic Hernia Congenital Esophageal Stenosis Congenital Hiatus Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Eventration Of Diaphragm Familial Adenomatous Polyposis Gastroschisis Intestinal Failure Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Rare Inflammatory Bowel Diseases Rare involving intestinal motility Short Bowel Syndrome Previous Next

< Back European Conference on Rare Diseases and Orphan Products (ECRD) 2026. Dec 30, 2025 Registrations are now OPEN for the European Conference on Rare Diseases and Orphan Products (ECRD) 2026. ERNICA is a proud associate partner of ECRD 2026. This edition of ECRD will engage patients, policymakers, clinicians, researchers and industry in a community-led effort to co-develop an EU Action Plan (or Strategic Framework) for Rare Diseases — a collective exercise in “planning for a Plan.” Together, ECRD 2026 will lay the foundations for a European Blueprint for Rare Diseases: 🔹 Consolidating existing initiatives 🔹 Identifying gaps and unmet needs 🔹 Defining concrete steps to accelerate progress This is where shared ambition becomes measurable outcomes — and where the rare disease community shapes what comes next. 👉 Register now to benefit from early-bird fees and secure your place at ECRD 2026: https://www.rare-diseases.eu/register/ Previous Next

< Back Clinician Researcher/(Post)doctoral Fellow Opportunity in Fetal Surgery Oct 15, 2024 The "MyFetUZ" research team at KU Leuven is looking for an enthusiastic pediatric surgeon or obstetrician (either in training or with completed specialization) to participate in their research program on fetal surgery for pulmonary hypoplasia, urinary tract obstruction, abdominal wall defects, and fetal membrane repair. This is not a clinical position; observation during clinical fetal surgery procedures is possible and deeper engagement depending on registration at the medical council and language knowledge. Holders of a PhD doctoral degree (hence postdocs) are eligible if they are non-EU citizens. KU Leuven PhD_application .pdf Download PDF • 316KB Previous Next