ERN Workshop on Endocrine cancer: A challenge in adults and children.

In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.
The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.

Registration closes on January 28th, 2022


EMA is launching a pilot to support the repurposing of established medicines for use in new indications by NGOs and academia.

EMA and the Heads of Medicines Agencies (HMA) are launching a pilot project to support the repurposing of medicines as a follow-up to the European Commission’s Expert Group on Safe and Timely Access to Medicines for Patients (STAMP) discussions on a proposal for a medicines repurposing framework.

The aim of this initiative is to support not-for-profit organisations and academia to gather or generate sufficient evidence on the use of an established medicine in a new Read

Domain specific Common Data Elements (DCDEs) Curation

In this meeting we 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). Hence we would very much like to have your opinion in the curation of these data items to make sure it is maximally useful for you.

Please feel free to forward this invitation to anyone in your ERN or [...]


Pseudonymisation and Anonymisation

This workshop will be the first of the ERN data strategy workshop series. During this first workshop, we will discuss the techniques and algorithms to anonymise and pseudonymise healthcare data from patients with rare diseases. A special focus will be given to the challenges associated with preserving the privacy of patients with rare diseases. The advantages and drawbacks of pseudonymised and anonymised data both in terms of research outcomes and privacy protection level will be discussed. Finally, in relation with the GDPR regulation, the legal implications of sharing anonymised and pseudonymised data with external stakeholders will be examined. Following these [...]


Educational Webinar 1 Current research services available for the rare diseases community

In this webinar, Anton Ussi, ERICA WP5 co-lead from from EATRIS will introduce the cutting edge resources and research services provided by the European Life Science Research Infrastructures (LS RIs) in the field of rare diseases. This webinar will empower ERN researchers to use the 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.