< Back ERS Panel discussion on lifelong respiratory care in OA/TOF & CDH Oct 28, 2025 Panel discussion on lifelong respiratory care in OA/TOF & CDH: paediatric and adult collaboration - 29 OCTOBER, 2025 We are proud to announce that ERNICA will be prominently represented in an upcoming Panel Discussion on Lifelong Respiratory Care in OATOF, CDH, Paediatric and Adult Collaboration (29 October 2025), hosted by ERS. The ERNICA Coordinator and one of our Patient Representatives have been invited to join this important forum, bringing the perspectives of both clinical leadership and lived experience. Their participation underscores ERNICA’s commitment to bridging pediatric and adult care pathways and to ensuring patient voices help shape the future of respiratory management in rare disease contexts. More information here: Panel discussion on lifelong respiratory care in OA/TOF & CDH: paediatric and adult collaboration - 29 OCTOBER, 2025 - Panel discussion on lifelong respiratory care in OA/TOF & CDH: paediatric and adult collaboration - 29 OCTOBER, 2025 - ERS Respiratory Channel Previous Next

< Back New ERNICA Publication Artificial Intelligence Competencies and Educational Needs Among ERNICA Members Sep 2, 2026 Our multinational survey of ERNICA members highlights an important reality: the healthcare community recognizes the promise of AI, but significant educational gaps remain. Key findings: Nearly half of respondents are already using AI applications. 94% reported no formal AI training. Reliability, accuracy, and ethical implications are among the biggest concerns. As AI becomes increasingly integrated into healthcare, developing the skills and confidence to use these tools responsibly will be just as important as the technology itself. Read the paper here: https://pubmed.ncbi.nlm.nih.gov/41558661/ Previous Next

< Back University Hospital Motol Czech Republic This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Duodenal And Small Bowel Atresia Esophageal Atresia Gastroschisis Morbus Hirschsprung Necrotizing Enterocolitis Omphalocele Short Bowel Syndrome Previous Next

< Back Marlinde van der Kamp Project Manager ERNICA/EPSA registry m.vanderkamp@dica.nl

< Back ERNICA 9th annual meeting, Frankfurt, Germany Apr 2, 2025 The 9th ERNICA annual meeting will be hosted by our members at Universitätsklinikum Frankfurt. The annual meeting is scheduled for April 2-4 ,2025. Please save the date in your agenda. More information will follow end this year. 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 Sant Joan de Déu Barcelona Hospital Spain This centre has expertise for ERNICA in: Congenital Diaphragmatic Hernia Eosinophilic Esophagitis Esophageal Atresia Morbus Hirschsprung Necrotizing Enterocolitis Rare Inflammatory Bowel Diseases Previous Next

SoMA e.V. is the German patient organisation that helps with questions about treatment, follow-up and psychosocial aspects of Anorectal Malformation (ARM), Hirschsprung's Disease (HD) and Cloacal Exstrophy. < Back SoMA SoMA e.V. is the German patient organisation that helps with questions about treatment, follow-up and psychosocial aspects of Anorectal Malformation (ARM), Hirschsprung's Disease (HD) and Cloacal Exstrophy. Previous Next

< Back Rebecca Pulvirenti CPMS Helpdesk cpmshelpdesk@ernica.ern-net.eu