webinar – EJP RD – European Joint Programme on Rare Diseases

EJP RD Webinar: Real-World data, Machine learning and Deep analytics in rare diseases

Onakoy Tanguy — Thu, 11 Jan 2024 08:19:04 +0000

The European Joint Programme on Rare Diseases is organizing the training webinar: “Real-World data, Machine learning and Deep analytics in rare diseases: Regulatory grade data collection for marketing authorization submissions – what is buzz, what is realistic?” that will be held online on 26 January 2024 from 2:00pm to 4:00pm CET.

Registration is open here before 25 January 2024 at 23:45 p.m

Marc Van Dijk (UCB) and Luis Pinheiro (EMA) will present views of industry and regulators on various facets of collecting, processing, and using data for research, regulatory and healthcare decisions. The two keynote talks will provide an overview of patient needs and challenges in rare disease R&D and of data and technologies that offer solutions to those challenges.

The panel discussion between representatives of patients, academia, regulatory scientists, industry and clinicians and with the audience will provide different perspectives on challenges and solutions in the context of regulatory realities and imperatives. They will also provide examples of solutions already used and their limitations.

More information here.

Join the “Call for Twinnings practical session and Challenge identification” Webinar!

Onakoy Tanguy — Fri, 27 Oct 2023 08:06:19 +0000

Procure4Health is organising a webinar for the 2nd Call for Twinnings practical session and Challenge identification on November 2nd, 2023.
By joining this webinar you will get the chance to:

– Get to know more about the programme and application process

– Receive advice to prepare a good proposal to apply for the 2nd Call for Twinnings

– Find out how to identify a suitable partner for your proposal

– Learn from the experience of NAVARRABIOMED, which was awarded in the 1st Call for Twinnings

More information here

Webinar on Implementation of co-funded European Partnerships

Onakoy Tanguy — Fri, 21 Apr 2023 12:48:03 +0000

On 27 April 2023, ERA-LEARN is organizing an online event focused on the implementation of co-funded European Partnerships. The target audience for this event includes coordinators and beneficiaries of co-funded European Partnerships who are looking for additional support in implementing their projects.

Main agenda items:

Welcome and Introduction
Status of European Partnerships
Governance and implementation of co-funded European Partnerships
Financial and call management
Moderated discussion via chat
Wrap up and outlook

Download full agenda

Registration

Please note that participation is limited. We will provide registered participants with a link for participation and information on the online tool used for the workshop.

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).

ERICA WP4 Webinar: Essential requirements before thinking about a clinical trial

Onakoy Tanguy — Fri, 10 Feb 2023 08:17:29 +0000

The European Rare Disease Research Coordination and Support Action consortium (ERICA) is organising the WP4 Clinical Trial Support webinar “Essential requirements before thinking about a clinical trial” in collaboration with EJP RD and ERN BOND. This webinar will provide you with an overview of what should be done before starting a clinical trial in a study site. All the requirements will be discussed according to the role that an investigator may have in the trial. Some guidance and sources will be also provided.

Registration is open here until February 26th.

Speaker: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

More information here.

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.

ERICA webinar: Practical guide on how to use the Catalogue of services and the IMT

Onakoy Tanguy — Mon, 10 Oct 2022 12:18:32 +0000

In this webinar, that will take place on October 24th from 13:00 to 14:00 CET, Anton Ussi (Operations & Finance Director at EATRIS), together with Agustin Arasanz Duque (Senior Innovation Manager at EATRIS), will provide practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD. This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation. It builds on the introductory webinar “Current research services available for the rare diseases community” that was organized in November 2021 (available on the ERICA website Educational Webinar 1 Current research services available for the rare diseases community

Registration is open here.

Webinar will be interactive with expected active audience involvement. Attendees are invited to visit both resources prior to webinar attendance and use the opportunity for an interactive discussion and a live tutorial. The Catalogue of Services contains a wide range of preclinical, clinical, regulatory and development services provided by the European infrastructures ranging from samples, data & databases, technologies & facilities, models & tools to expertise & advice.
The Innovation Management Toolbox (IMT) is a free-to-use and curated reference library of resources in rare disease translational medicine that will provide investigators with self-help resources specific to their needs.

EJPRD Webinar: The Statistical Evaluation of Surrogate Endpoints in Clinical Trials

Loranne Charrier — Mon, 19 Sep 2022 13:41:11 +0000

EJP RD is delighted to announce an upcoming webinar on “The Statistical Evaluation of Surrogate Endpoints in Clinical Trials” which will take place online, on November 18, 2022, at 16:00 CEST.

The webinar will be divided in two parts; a first half of the webinar will be devoted to the in-depth review of surrogate marker evaluation, with a second part consisting of one hour of panel discussion with known experts, which will bring out various perspectives (e.g. regulatory, pharma-industrial, academic, and clinical perspectives) of the topic.

Registration is mandatory and open until November 14; a registration form can be accessed here.

For more information, click here.

RDI-WHO Webinar on The International Classification of Diseases coming soon

Loranne Charrier — Fri, 09 Sep 2022 14:16:15 +0000

Rare Diseases International is delighted to announce their upcoming webinar on the use of the International Classification of Diseases 11th Revision (ICD -11) for rare diseases, which will take place on September 27^th, at 14.00 CET. The webinar will be co-hosted by RDI and the World Health Organization.

The ICD is developed and updated by the WHO; it is the global standard for recording health information and causes of death. The main goal of the webinar will be to learn more about how the rare disease community can benefit from the ICD and how it can use this critical global resource.

Registration is not mandatory; the webinar can be attended using a Facebook or Zoom link. The webinar will not be registered.

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.