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In this webinar, an insightful introduction to the topic quality of life in children and adolescents born with CDH will be provided. Subsequently, the findings of studies conducted at two esteemed institutions: Erasmus MC, Sophia Children's hospital in Rotterdam, the Netherlands, and, Astrid Lidgren's Children's hospital in Stockholm, Sweden, will be discussed.

This interactive webinar aims to provide an overview on the current knowledge on health related quality of life in long-gap esophageal atresia and point out the knowledge gaps, as a framework of a joint discussion on its implication for clinical practice and future research.

This interactive webinar will focus on a recently published article in the European Journal of Pediatric Surgery (EJPS). This article reviews patient-reported outcome measures (PROMs) in recent pediatric surgical research considering the conditions Abdominal Wall Defects, Anorectal Malformations, Biliary Atresia, Congenital Diaphragmatic Hernia, Duodenal Atresia, Esophageal Atresia, Hirschsprun...

The title of this webinar is: Research findings on mental health of parents in the context of esophageal atresia (EA) / tracheoesophageal fistula (TEF): recommendations for digitalised psychological support. This interactive webinar aims to increase awareness of the psychological impact of children's feeding and swallowing difficulties on parents and carers. It will present proposed content for...

Animatie video over ouder-kind interacties, onderdeel van de video series 'Transition of Care'. ERNICA (ern-ernica.eu/) Wil je feedback geven over jouw ervaringen na het bekijken van deze video? Klik dan op deze link voor het invullen van een (Engelstalige) vragenlijst: ec.europa.eu/eusurvey/runner/Video_Parent-childinteractions

Animatie video over alcohol en roken, onderdeel van de video series 'Transition of Care'. ERNICA (ern-ernica.eu/) Wil je feedback geven over jouw ervaringen na het bekijken van deze video? Klik dan op deze link voor het invullen van een (Engelstalige) vragenlijst: ec.europa.eu/eusurvey/runner/Video_AlcoholSmoking

Animatie video over Seksualiteit, onderdeel van de video series 'Transition of Care'. ERNICA (ern-ernica.eu/) Wil je feedback geven over jouw ervaringen na het bekijken van deze video? Klik dan op deze link voor het invullen van een (Engelstalige) vragenlijst: ec.europa.eu/eusurvey/runner/Video_Sexuality

The title of this webinar is: Eat to live, or live to eat? - Quality of life in relation to eating in children and adults born with esophageal atresia. This interactive webinar will explore quality of life in relation to eating in both children and adults with esophageal atresia, drawing on qualitative and quantitative findings, cultural and cross-country differences and patient perspectives. I...

Video on the development of transition of care programs for colorectal patients: Experiences from three European centers (Chapter 2 of the Helsinki series). ERNICA (ern-ernica.eu/) Do you want to tell us about your experience of watching this animation? Provide your feedback anonymously via this survey: ec.europa.eu/eusurvey/runner/ERNICA_HelsinkiChapter2

Video on on a general overview of transition of care by Silja Kosolove (Chapter 1 of the Helsinki series). ERNICA (ern-ernica.eu/) Do you want to tell us about your experience of watching this animation? Provide your feedback anonymously via this survey: ec.europa.eu/eusurvey/runner/ERNICA_HelsinkiChapter1

The aim of the webinar is to provide an overview of the concepts “patient-reported outcome, quality of life and health-related quality of life” and how the quality of life (QoL) and health-related quality of life (HRQoL) have been evaluated in populations with the need for advanced pediatric surgery. The benefits of measuring QoL/HRQoL in patients for care and research will become apparent. We ...

Starting a multicenter and international trial is a process with challenges and pitfalls. Clinical trials with patients with a rare disease are maybe even more difficult. At the same time ERNICA can strengthen clinical trials because of the cooperation at European level. What can we learn from current trials and how can we improve the trail readiness within ERNICA?

Video on the patients' point of view (Chapter 3 of the Helsinki series). ERNICA (ern-ernica.eu/) Do you want to tell us about your experience of watching this animation? Provide your feedback anonymously via this survey: ec.europa.eu/eusurvey/runner/ERNICA_HelsinkiChapter3

Animation video on Sexuality, from the video series 'Transition of Care'. ERNICA (ern-ernica.eu/) Target audience: Healthcare providers Do you want to tell us about your experience of watching this animation? Provide your feedback anonymously via this survey: ec.europa.eu/eusurvey/runner/Video_Sexuality

Transition of Care - Alcohol and Smoking

Transition of Care - Parent-child interactions

Transition of care: Initial impressions from the Erasmus MC

The Clinical Patient Management System (CPMS)

What is small bowel atresia?: An ERNICA animation for parents and families

Surgical treatment for Hirschsprung’s Disease: An ERNICA animation for parents and families

LIFE - Lifelong Follow up for Esophageal atresia

Esophageal Dilation for children with Esophageal Atresia

Changing the central venous catheter dressing for children at home

GERD - (GastroEsophageal) REFLUX (Disease) in Esophageal Atresia Patients: An ERNICA animation

What is Esophageal Achalasia? An ERNICA animation for patients, parents and families

What is Gastroschisis? An ERNICA animation for parents and families

What is Omphalocele? An ERNICA animation for parents and families

Hirschsprung-associated enterocolitis in children: An ERNICA animation for parents and families

Disconnecting the parenteral nutrition infusion for children at home: An ERNICA animation