ERICA – EJP RD – European Joint Programme on Rare Diseases

EJP RD & ERICA Joint Conference – Recordings

Onakoy Tanguy — Wed, 13 Dec 2023 13:19:16 +0000

The ERICA & EJP RD Joint Conference was held on November 21st, 2023, in Amsterdam. This event aimed to unite stakeholders in European Reference Networks (ERNs) and Rare Disease (RD) Research. It brought together medical professionals, researchers, patient advocates, policymakers, and industry representatives interested in improving care and advancing research for rare diseases.

Recordings of the event are available here!

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.

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.

EJP RD – ERICA Workshop: Ethics and regulatory considerations for ERN Data Access Committee members

Onakoy Tanguy — Wed, 08 Jun 2022 08:25:23 +0000

We are happy to invite you to take part in a workshop addressing “Ethics and regulatory considerations for ERN Data Access Committee members”.
This workshop is jointly organised by ERICA and EJP RD and will take place online on 30th June from 10 am to 12:30 pm.
It primarily aims to train the members of the ERNs Data Access Committee members on the legal and ethical aspects to consider when examining an incoming data access request. All other interested stakeholders are welcome to join.

You will find the agenda here

Registration is open here.

The link to the meeting will be sent a few days before the event.

ERICA new matchmaking tool: Collaborative inter-ERN Research Wall

Onakoy Tanguy — Mon, 09 May 2022 08:01:40 +0000

ERICA aims to promote collaborative inter- ERNs research projects. It is therefore crucial to have a centralised location to announce any new project and search for collaborators. A specific web page has been created for this purpose on the ERICA website Research Wall (Please note that the current page only contains examples)

It provides basic information about the open calls for collaboration as well as contact details of the project PI. If you have any new inter- ERN project that you wish to advertise via this research wall, please fill this excel file with the project you wish to advertise and return to ERICA Coordinating office.

Please note that only inter- ERNs collaborative projects will be advertised via this research wall.

The new projects will be regularly announced and promoted. Additionally, if you wish to receive updates directly by email, we kindly ask you to REGISTER HERE.

EJP RD co-organises meeting on Domain specific Common Data Elements (DCDEs) Curation

Ngangta Mbaidoum — Fri, 03 Dec 2021 12:45:42 +0000

EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.

The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.

In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).

More information and registration here: https://erica-rd.eu/event/domain-specific-common-data-elements-dcdes -curation/