eurogen – EJP RD – European Joint Programme on Rare Diseases

Webinar: Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation

Onakoy Tanguy — Wed, 15 Feb 2023 13:28:58 +0000

ERN eUROGEN and ERNICA are organising a 1-hour webinar entitled “Primary Obstructive Megaureter (POM): Predictors of Success and Failure after Balloon Dilatation” on February 22nd, 2023 at 18:00 CET.

Registration is open here

In this webinar aimed at healthcare professionals, Dr Sonia Pérez-Bertólez and Dr Oriol Martín-Solé, Consultants in the Department of Paediatric Urology at Hospital Sant Joan de Déu Barcelona (ES), will review the endoscopic technique step by step, its indications and the results of endoscopic treatment of primary obstructive megaureter, used at their centre as the first treatment option since 2007.

Reviewing over 50 patients treated at their centre from 2007 until now, with long-term follow-up in most, they will expose the main risk factors for treatment failure and the need for reimplantation after endoscopic treatment.

Those who attend the webinar live will receive a Certificate of Attendance (unaccredited).

ERN Webinar: Patients with Trisomy 21 and ARM Versus Patients with ARM Without Fistula

Onakoy Tanguy — Wed, 08 Feb 2023 08:25:05 +0000

ERN eUROGEN are organising a webinar dedicated to healthcare professionals and patient groups on Wednesday, 8 February at 18:00 CET. Dr Eva Amerstorfer, Consultant (Department of Pediatric and Adolescent Surgery, University Hospital Graz, AT) and Dr Inbal Samuk, Director of Colorectal Services (Pediatric and Adolescent Surgery Department, Schneider Children’s Medical Center, Petah Tikva, IL) will present this webinar.

About 5% of children with Trisomy 21 are born with an ARM, which in up to 95% of patients is classified as an ARM without fistula. ARM without fistula is itself a rare, distinct anomaly in the spectrum of anorectal malformations and occurs in 5% of all patients with ARM.

Features of this type of anomaly will be described, as well as the results of a study conducted by the ARM-Net Consortium on the clinical characteristics and one-year outcome of patients with Trisomy 21 and ARM and patients with ARM without fistula. Management and outcome parameters will be compared between these patient groups.

While both patient groups require special attention in their management, treating physicians need to be aware of associated pathologies in patients with Trisomy 21, which can influence bowel function and outcomes.

ERN eUROGEN webinar: Proximal Hypospadias: Challenges in Surgical Management

Loranne Charrier — Fri, 02 Sep 2022 14:02:21 +0000

ERN eUROGEN is happy to announce their upcoming webinar, titled “Proximal Hypospadias: Challenges in Surgical Management”.

Surgical management of proximal hypospadias is associated with major challenges regarding the establishment of a clear and effective strategy in order to optimize the functional and cosmetic outcome, reduce morbidity due to repeat interventions and minimize postoperative complications.

This webinar will take place on Wednesday 14 September 2022 at 18:00 CET, and will be presented by Prof Dr Josef Oswald and Dr Bernhard Haid from the Department of Pediatric Urology, Ordensklinikum Linz (AT). It aims to provide an overview of the current state of the art in this field. It is aimed at both healthcare professionals and patients.

Register here.

ERN eUROGEN webinar: Williams-Beuron Syndrome: A Focus on Long-Term Patient Care

Onakoy Tanguy — Mon, 27 Jun 2022 15:26:53 +0000

ERN eUROGEN, ERN ITHACA and ERN ERKNet are organising a webinar on July, 6th 2022, at 18:00 CEST.

You can register here: https://register.gotowebinar.com/register/4452634388200656141

During this event, aimed at both healthcare professionals and patient organisations, all uro-nephrological and cardiological aspects of Williams-Beuren Syndrome will be discussed, including clinical scenarios.

ERN eUROGEN webinar: Summer ’22 Update

Onakoy Tanguy — Mon, 27 Jun 2022 15:03:14 +0000

ERN eUROGEN is organising a webinar on June, 29th 2022, at 18:00 CEST. This webinar will provide an overview of their activities and an update on the network’s most recent developments.

You can register here : https://register.gotowebinar.com/register/4850315649781014540

The event will cover the development of the ERN eUROGEN registry, new features of the clinical patient management system (CPMS) and the possibilities available within the ERN Exchange Programme, as well as other topics.