Patients' Quality of Life is Severely Impacted by Mere Discussions without Realization
of the Imperative Centralization of Specialist Surgery and Subsequent After-Care
1
Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum
Bremen-Mitte, Bremen, Germany
Nicole Schwarzer
2
SoMA (the German patient organization for Anorectal Malformations and Morbus Hirschsprung),
Munich, Germany; ePAG (Patient Advocacy Group) representative in ERN eUROGEN (the
European Reference Network in Rare and Complex Uro-genital Diseases and Conditions)
Anke Widenmann-Grolig
3
KEKS (German self-help organization for esophageal conditions), Stuttgart, Germany;
ePAG (Patient Advocacy Group) representative in ERN ERNICA (the European Reference
Network for Rare Inherited and Congenital Digestive and Gastrointestinal Anomalies)
Dalia Aminoff
4
AIMAR (Italian patient organization for anorectal malformations and morbus Hirschsprung),
Rome, Italy; ePAG (Patient Advocacy Group) representative in ERN eUROGEN (the European
Reference Network in Rare and Complex Uro-genital Diseases and Conditions)
Graham Slater
5
EAT (The Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups)
and Esophageal Atresia and Tracheo-Esophageal Fistula Support Federation, Nottingham,
United Kingdom; ePAG (Patient Advocacy Group) representative in ERN ERNICA (the European
Reference Network for Rare Inherited and Congenital Digestive and Gastrointestinal
Anomalies)
