This webinar was presented on Wednesday 26th October 2022 by dr. Eberhard Schmiedeke, paediatric surgeon in Klinikum Bremen-Mitte Germarny and Ms. Dalia Aminoff, head of AIMAR, the Italian patient organisation for ARM (Ano-Rectal Malformations). It is aimed at healthcare professionals, patients groups and politicians responsible for healthcare.
Common sense and scientific evidence make it clear that treatment results become better with increasing experience. In rare diseases like anorectal malformations, patient numbers are low, and centralisation of care is necessary, yet difficult to achieve. We describe examples of successful centralisation (biliary atresia in Great Britain, congenital heart defects), reasons for resistance against it, and possible steps for the near future, from the perspectives of a patient representative and a paediatric surgeon.
The ARM webinar series covers all aspects of paediatric colorectal surgery, in particular (congenital) anorectal malformations. They are joint presentations between ERNs eUROGEN and ERN ERNICA, and are supported by ARM-Net.
ERN eUROGEN is the ERN for rare and complex urorectogenital diseases and conditions. For more information, visit www.eurogen-ern.eu.
ERN ERNICA is the ERN for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. For more information, visit https://ern-ernica.eu.
The ARM-Net Consortium is a group of professionals and patient representatives that aim to exchange data and knowledge to improve clinical care and to perform research on congenital anorectal malformations. For more information, visit https://www.arm-net.eu
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