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

Training and Education ERNICA develops and implements online and face-to-face educational/training activities targeted towards medical professionals, patients and families. Through its cross-border training activities, ERNICA aims to build capacity and increase access to expertise at EU level. TRAINING AND EDUCATIONAL ACTIVITIES Flagship programme The Flagship Surgical Training Programme is a joint initiative of ERNICA and eUROGEN, aimed 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. Click here for more information. Webinars ERNICA also engages in live joint educational webinars with eUROGEN, EUPSA and Research Collaboration Webinars. You can find recorded versions of these webinars on our YouTube channel. . The joint webinars with eUROGEN are specifically focused on ARM and Hirschsprung's Disease ('colorectal series'). For more information on registration click here . Courses ERNICA organises hands-on colorectal and CDH surgical training courses, with support from ERNICA member centre Radboud MC, EUPSA and eUROGEN. Please find out more here . Other eductional activities ERNICA has set up its own YouTube channel for the dissemination of relevant e-learning and video content for healthcare professionals and/or patients and their families. . ERNICA has also organised joint educational sessions with supporting partners, such as the ERNICA-ESPGHAN Educational Session on Feeding, Nutrition and Growth in Esophageal Atresia Patients. Other educational activities ERNICA-ESPGHAN Educational Session on Feeding, Nutrition and Growth in Esophageal Atresia Patients ERNICA Artificial Intelligence Session

< Back Flagship Surgical Training Programme - Submit your case! Aug 26, 2025 Flagship Surgical Training Programme ERNICA and eUROGEN have jointly launched the Flagship Surgical Training Programme to strengthen expertise in ultra-rare and highly complex congenital surgical care across Europe. The initiative enables centres treating very rare or complex cases to host “Flagship” surgeries, where high-potential junior consultants can join as part of a travelling team. All cases are discussed in the Clinical Patient Management System (CPMS 2.0.), with structured pre- and post-operative panels to ensure shared learning and follow-up. This programme is a unique opportunity to build succession planning, secure continuity of care, and prepare the next generation of rare disease surgeons. Learn more and submit your case: https://www.ern-ernica.eu/flagship-training-programme Previous Next

< Back EURORDIS ERN patient partnership framework development Nov 6, 2023 PATIENT PARTNERSHIP IN THE ERNS The new EURORDIS Patient Partnership Framework describes partnership in the ERNs as a relationship between healthcare professionals and people living with a rare disease, or their carers, which informs decision-making. The key to achieving true, systematic patient partnership within the networks is involving these rare disease community members as equal partners in all ERN domains. Read more: 2023_Eurordis_PatientPartnershipFramework .pdf Download PDF • 1.05MB Previous Next

Intestinal Failure care in the Netherlands Where is care provided? Children and adults with intestinal failure are treated in specialised university medical centres. These centres provide multidisciplinary expertise in intestinal rehabilitation and parenteral nutrition. Care for children The following centres are recognised as expert centres for paediatric intestinal failure: Erasmus MC - Sophia Children's Hospital (Rotterdam) Amsterdam UMC - Emma Children's Hospital (Amsterdam) Radboud UMC - Amalia Children's Hospital (Nijmegen) UMC Groningen - Beatrix Children's Hospital (Groningen) Care for adults For adults with intestinal failure, specialised care is available at: Amsterdam UMC (Amsterdam) Radboud UMC (Nijmegen) UMC Groningen (Groningen) Your general practitioner or local hospital can refer you to one of these centres. Psychological & Social Support Living with intestinal failure can be challenging - support is available for both patients and parents to yelp you cope with the emotional, practical and social aspects of the condition. At your treating centre, you may have access to: Hospital psychologist Social worker Educational or school support for your child Ask your treating centre which services are available locally. In addition to professional support, many parents find it helpful to connect with other families who are going through a similar experience. Speaking to someone who has been in your situation can provide reassurance, practical tips, and help you find your way after diagnosis. Your treating centre may be able to help you get in touch with other patients or parent support groups, so do not hesitate to ask them about available peer support opportunities. Relevant patient organisations can also be found at the bottom of this page. Parenteral Nutrition (PN) If your child needs parenteral nutrition, your care team will support you throughout the preparation and transition to home. You can ask your centre whether a transfer nurse is available to help organise the practical aspects of going home. PN is covered by health insurance in the Netherlands. All necessary equipment and supplies are arranged through your pharmacy Before discharge: You will receive comprehensive training on how to safely care for your child at home. Your child will only be discharged once parents and/or caregivers feel confident and are fully trained to manage PN safely. If home care is needed, this will be arranged in advance. Support is always available: A 24/7 support line is available for urgent questions or emergencies, please ask your care team for the correct contact number. Costs and reimbursement In the Netherlands, most care related to intestinal failure is covered by health insurance. Medical specialist care is covered by mandatory health insurance Parenteral Nutrition and the necessary medical supplies are reimbursed Additional support, such as extra care at home, may be funded through a personal budget (PGB), depending on your situation Some additional costs (such as travel expenses) may be covered; however, this can vary depending on your health insurance coverage and income. If you are unsure about what is covered, you can ask: Your hospital social worker Your insurance provider School and education Most children with intestinal failure can attend school. Support may include: Hospital schooling or online education during hospital admissions Home or online teaching during recovery periods Access to special education, if needed Guidance and support for returning to regular school Patient organisations Connecting with other families can be very helpful. Sharing experiences with people who understand your situation can provide support, practical advice, and reassurance. In the Netherlands, you can join the following peer-support groups: Kinderen met TPV | Facebook Short bowel, darmfalen, TPV en sondevoeding - besloten groep | Facebook In addition to Dutch groups, there are also international communities where you can connect with families worldwide: MID/MVID Family Support (Facebook) Association Cure MVID | Dynamiser la recherche contre la MVID Short Gut Syndrome Families' Support Group | (Facebook) Short Bowel Foundation International Support | (Facebook)

ERNICA Courses ERNICA organises hands-on colorectal and CDH surgical training courses, with support from ERNICA member centre Radboud MC, EUPSA and eUROGEN. The ERNICA hands-on colorectal and CDH surgical training courses make use of the Pediatrickboxx simulation models. These models give trainees the opportunity to practice several rare procedures in any setting, to improve their skills and structured approach. There will be limited spaces available at each course (available to clinicians / trainees from all over Europe). Please find out more about the ERNICA hands-on courses by clicking on the buttons below. Colorectal courses CDH courses

< Back Interview with Graham Slater (ERNICA patient representative and EURORDIS board member) Oct 20, 2023 Please read more about this interview by clicking on the link below: From Awardee to Board Member: An Interview with Graham Slater - EURORDIS Previous Next

< Back Noa Ouwehand EPSA Project Manager n.ouwehand@dica.nl

< Back Erasmus MC Netherlands This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Esophageal Atresia Gastroschisis Intestinal Failure Intractable Diarrhea Of Infancy Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Rare Inflammatory Bowel Diseases Short Bowel Syndrome Previous Next