An ERN ReCONNECT working group* focused on pregnancy and family planning, launched a survey to capture patients’ and caregivers’ unmet needs related to pregnancy and family planning. The survey is directed to patients with rare and complex diseases (and their caregivers) […] LEARN MORE
All parents/patients affected by esophageal atresia may participate in this survey. Data collected will be used as part of a PhD study link to Stellenbosch University, South Africa. The study has been approved by the Health Research Ethics Committee of Stellenbosch […] LEARN MORE
This short animation is a comforting and easily followed introduction to TOF/OA. The terms are clearly explained in a down-to-earth way and there is an overview of what this might mean for your child. It’s creator, Vicki Martin, is an […] LEARN MORE
The STEPS-EA trial is an ERNICA multi-centre randomised controlled trial looking at intralesional steroid injections to prevent refractory strictures in patients with esophageal atresia. The trial involves 1:1 randomization to injection with 10 mg/ml TAC (Kenacort-A 10) prior to balloon dilatation […] LEARN MORE
Vuokko Wallace, DClinPsych (a),(b), Kirsi Honkalampi, PhD (b), Elizabeth Sheils, MSc (a) (a) Department of Psychology, University of Bath, UK (b) Department of Psychology, University of Eastern Finland, Finland See the article on the Journal of Pediatric Nursing Abstract Purpose […] LEARN MORE
Rony Sfeir, MD(1), Veronique Rousseau, MD(2), Arnaud Bonnard, PhD(3), Thomas Gelas, MD(4), Madeleine Aumar, MD(1), Nicoleta Panait, MD(5), Christian Piolat, PhD(6), Sabine Irtan, PhD(7), Virginie Fouquet, MD(8), Aurelie Lemandat, MD(9), Stephan De Napoli, MD(10), Edouard Habonimana, MD(11), Thierry Lamireau, PhD(12), […] LEARN MORE
Svetlana V. Glinianaia (1), Joan K. Morris (2), Kate E. Best (1), Michele Santoro (3), Alessio Coi (3), Annarita Armaroli (4), Judith Rankin(1) (1) Population Health Sciences Institute, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, United Kingdom (2) […] LEARN MORE
Stefanie Witt 1, Michaela Dellenmark-Blom 2, Susanne Kuckuck 3, Jens Dingemann 4, Kate Abrahamsson 2 5, Carmen Dingemann 4, John Eric Chaplin 5, Benno Ure 4, Monika Bullinger 3, Vladimir Gatzinsky 2, Linus Jönsson 2, Julia Hannah Quitmann 3 1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 – W26, 20246, Hamburg, Germany. s.witt@uke.de. 2Department of Pediatric Surgery, Queen Silvia Children’s Hospital, Sahlgrenska […] LEARN MORE