< 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

< Back Hannover Medical School Germany This centre has expertise for ERNICA in: Achalasia Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Eventration Of Diaphragm Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Previous Next

< Back Social Medical Center East Affiliated partner ERNICA Previous Next

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. < Back 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. Previous Next

Two supporting partners represents people with intestinal failure within the ERNICA network < Back Supporting partners Two supporting partners represents people with intestinal failure within the ERNICA network Previous Next

ERNICA Quality of Life Working Group The ERNICA Quality of Life (QoL) Working Group was established at the end of 2022 and is an integral part of the overarching patient journey workstream. Vision statement Together we work towards better care and treatment for the affected individuals and their families, preserving and improving their QoL This is an important part of a holistic approach to advance knowledge of and improve long-term outcomes, using multidisciplinary and international competence to create an increased understanding and adaptation of clinical, psychological, social, environmental aspects of QoL in children and adults and their families across countries/cultures Furthermore, to generously share knowledge and facilitate sustainable and new collaborative research, focusing on these aspects in conditions covered within ERNICA The Quality of Life working group is here to... Facilitate... A focus on Patient Reported Outcomes (PROs) / QoL) Collaborative PROs / QoL initiatives Use of Patient Reported Outcome Measures (PROM) / QoL questionnaires in research, clinical practice and registries. Support... Availability of standardized condition-specific PROM / QoL questionnaires in many languages. Development of patient / family educational and self-help materials. Standards of meaningful patient involvement are met. Create learning... Methodology Existing literature / current knowledge Dissemination Research collaboration webinars Webinar 1: Patient-reported outcome, Quality of Life and health-related quality of life in paediatric surgical populations. Webinar 2: Eat to live, or live to eat? - Quality of Life in relation to eating in children and adults born with esophageal atresia. Webinar 3: Research findings on mental health of parents in the context of esophageal atresia (EA) / tracheoesophageal fistula (TEF): recommendations for digitalised psychological support. Webinar 4: Patient-reported outcome measures and their application in recent paediatric surgical research Webinar 5: Long-gap esophageal atresia Webinar 6: Quality of Life in children with CDH

< Back UMC Utrecht Netherlands This centre has expertise for ERNICA in: Esophageal Atresia Previous Next

For Patients and Families This page contains information that may be of importance to patients with a rare inherited and congenital disease, of for parents that have a child with one of these conditions. WHAT WE DO Patient-tailored guidelines Patient versions of guidelines/consensus statements. Read More Patient Journeys A patient journey describes a number of key stages in the patient's life. Read More Animations ERNICA has developed a series of animation videos for patients and families in various languages. Read More Traveling abroad with intestinal failure ERNICA has developed an online map tool so that you can identify specialist centres across Europe Read More Sexual support Sexual support for people with Anorectal malformations and Hirschsprung's disease. Read More Patient representatives In 2015, the European Commission Expert Group on Rare Diseases published an Addendum to their 2013 ERN recommendations which formally recognised the value patient representatives can bring to the ERNs by being involved in their decision and opinion making structures. In 2016, EURORDIS and the European rare disease community established 24 European Patient Advocacy Groups (ePAGs) aligned to the clinical scope of each ERN. The ERNICA European Patient Advocacy Group (ePAG) is comprised of Associated partner patient organisations and their ePAG advocates (/patient representatives). Patient organisations that meet the following requirements may apply and be invited by the ERN Coordinator in agreement with the ePAG lead, on behalf of the ePAG, to join ERNICA as Associate partners: 1. The organisation is legally registered and operates in Europe (48 countries as defined by EURORDIS based on definitions by the EU, the Council of Europe and the WHO-Europe), representing patients and families living with a rare disease that belong to the scope of ERNICA. This registration requirement can be waived in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons. 2. Has a governing board made up of a majority patients or of family members of patients . This requirement can be waived in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons. 3. Is financially independent, particularly from the pharmaceutical industry (max. 50% of funding from several companies). 4. Holds non-profit status . 5. Has proven activities such as patient support and/or advocacy activities and/or research. As part of the application process, these patient organisations will formally endorse an ePAG advocate to be active in ERNICA working groups. They will represent the voice and interests of all patients that fall under the scope of the ERN, beyond their own disease. If the application is successful, ERNICA and the patient organisation will sign an Associate Partnership Collaboration Agreement. Patient organisations/patient representatives interested in being involved in ERNICA can contact Sara Roman Galdran (project manager) for more information: s.romangaldran@erasmusmc.nl View by listing Close listing Select Disease 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 AFMAH 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 APEHDia Two supporting partners represents people with intestinal failure within the ERNICA network Read More Supporting partners 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 GUTS UK 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 EOS network -Eosinophilic diseases 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 Achalasie-Selbsthilfe e.V 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 Sverige (Sweden) 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 NEC UK 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 Platform CHD 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 CDH UK The Vereniging Ziekte van Hirschsprung’s Association has been committed to increasing and disseminating knowledge about Hirschsprung's Disease among practitioners, midwives, paediatricians and other medical staff, so that the disease is recognised early in newborns. Read More Vereniging Ziekte van Hirschsprung's 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 Esophageal Atrasia Global Support Group