< Back Prof. dr. René Wijnen Coordinator for ERNICA r.wijnen@erasmusmc.nl / ern-ernica@erasmusmc.nl

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. < Back Vereniging Ziekte van Hirschsprung's 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. Previous Next

ERNICA newsletters Below is the archive of ERNICA newsletters. If you haven't subsribed yet, you can do so here Select Year ERN ERNICE Newsletter - issue 25 September, 2026 Read ERN ERNICA Newsletter - issue 24 July, 2026 Read ERN ERNICA newsletter - issue 23 December, 2025 Read ERN ERNICA newsletter - issue 22 September, 2025 Read ERN ERNICA newsletter - issue 21 May, 2025 Read ERN ERNICA newsletter - issue 20 March, 2025 Read ERN ERNICA newsletter - issue 19 December, 2024 Read ERN ERNICA newsletter - issue 18 September, 2024 Read ERN ERNICA newsletter - issue 17 June, 2024 Read ERN ERNICA newsletter - issue 16 June, 2024 Read ERN ERNICA newsletter - issue 15 December, 2023 Read ERN ERNICA newsletter - issue 14 August, 2023 Read ERN ERNICA newsletter - issue 13 December, 2022 Read ERN ERNICA newsletter - issue 12 November, 2022 Read ERN ERNICA newsletter - issue 11 August, 2022 Read ERN ERNICA newsletter - issue 10 December, 2021 Read ERN ERNICA newsletter - issue 9 July, 2021 Read ERN ERNICA newsletter - issue 8 December, 2020 Read ERN ERNICA newsletter - issue 7 November, 2020 Read ERN ERNICA newsletter - issue 6 July, 2020 Read

< Back ERNICA Webinar on Recurrent & Persistent Tracheoesophageal Fistula Nov 11, 2026 You are invited to the next ERNICA research collaboration webinar on Wednesday 11 November at 16.00 CET . The title of this webinar is: "Recurrent & Persistent Tracheoesophageal Fistula" . We invite anyone interested in this topic to join and participate. Recurrent and persistent tracheoesophageal fistula (TEF) requires careful consideration of the available treatment options. In this webinar, paediatric surgeons Jan F. Svensson and Stefaan Tytgat bring together the experience of two European centres of expertise to discuss the different treatment options for recurrent and persistent TEF. During this webinar, we will explore: Surgical treatment An in-depth look at the surgical approaches to recurrent and persistent TEF, with practical insights into the procedural details that may increase the chance of success. Endoscopic treatment An overview of the endoscopic approaches, how they compare with surgical treatment, and the procedural details that may help achieve a successful outcome. At the end of this session, time will be allocated for questions from the audience. The webinar will be moderated by Prof. Dr. Martin Lacher. Wednesday 11 November, 16.00 - 17.00 CET Click here to REGISTER for the webinar Previous Next

< Back 12th European Conference on Rare Diseases & Orphan Drugs, 15 & 16 May Mar 15, 2024 The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. With over 1000 participants , the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts, these discussions culminate in clear policy recommendations that can influence both EU and national policies. Get ready for the next ECRD, a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels. Registration is now open with a limited number of 300 places available to join us in person and early-bird fees available until 2 February! Previous Next

< Back ERNICA 10th annual meeting May 19, 2026 10th ERNICA Annual Meeting: Highlights, Summary Report & Educational Video From Wednesday 25 to Friday 27 March 2026, the 10th ERNICA Annual Meeting was successfully hosted by Motol University Hospital in Prague, Czechia. During this annual meeting, clinicians and patient representatives from across Europe came together in person for three days of meaningful exchange. Participants connected, shared new initiatives, strengthened collaborations, and exchanged expertise on topics related to rare inherited and congenital anomalies. For those who would like to revisit the key discussions and outcomes, we are pleased to share the summary report of the meeting, which highlights the main insights and developments. 10th ERNICA meeting summary 2026 - website .pdf Download PDF • 18.53MB In addition, an educational video on Guidelines Methodology has been developed based on the sessions held during the meeting. We would like to sincerely thank everyone who attended and contributed to the success of this meeting. Your valuable input and active participation are greatly appreciated. Previous Next

< Back Call on the EU institution and EU Member States' governments to stand by the European Reference Networks Oct 6, 2023 The European Reference Network representatives and people living with a rare disease across Europe, call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare. In particular, ERNs ask for Secure long-term financial stability Designate Affiliated Partners and expand the disease coverage Support greater cross-ERN collaboration Establish treatment eligibility and molecular therapeutic panels Fully integrate ERNs into national health system services Urgently define and systematically collect and monitor health and experienced-based outcome measures Better support and recognition of the contribution of volunteer patient organisations, patient representatives, healthcare providers and clinicians in the Networks The complete letter can be found here Previous Next

< Back Hospital Universitari Vall d'Hebron Spain This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Eosinophilic Esophagitis Esophageal Atresia Gastroschisis Necrotizing Enterocolitis Rare Inflammatory Bowel Diseases Previous Next

< Back Hospital Center University De Lille France This centre has expertise for ERNICA in: Achalasia Congenital Diaphragmatic Hernia Congenital Esophageal Stenosis Congenital Hiatus Hernia Duodenal And Small Bowel Atresia Eosinophilic Esophagitis Esophageal Atresia Gastroschisis Morbus Hirschsprung Omphalocele Short Bowel Syndrome Previous Next

< Back Hospital of Lithuanian University of Health Sciences Kauno Klinikos Affiliated partner ERNICA Previous Next

< Back Medical University of Gdansk Poland This centre has expertise for ERNICA in: Esophageal Atresia Gastroschisis Morbus Hirschsprung Omphalocele Previous Next

< Back ERNICA Webinar on Intestinal Malrotation: Who really needs surgery? Aug 19, 2026 ERNICA Webinar on Intestinal Malrotation: Who really needs surgery? - Wed, Aug 19, 2026 4:00 PM - 5:00 PM CEST Intestinal malrotation spans a wide clinical spectrum, from incidental findings to life-threatening midgut volvulus. Deciding who truly needs surgery remains a topic of ongoing debate. This webinar takes a multidisciplinary approach, bringing together the perspectives of paediatric surgeon, Janne Suominen , and paediatric radiologist, Aurelio Secinaro , to explore the diagnostics and treatment of intestinal malrotation. You can register via here . We look forward to having you attend the event! Previous Next