• SPIDER released
    NEWS 20 May 2022

    ERDRI.spider tool launch: It will foster research and better management of health data

    The EU RD Platform has just launched its new ERDRI tool, SPIDER (Secure Privacy-preserving Identity management in Distributed Environments for Research).
    SPIDER enables the pseudonymisation of rare disease patients’ data in local, regional and national rare disease registries all across Europe.
    Giving a pseudonym to a patient allows working with the patient’s data without revealing their identity at any point. In fact, this is the only safe way to exchange, share and transfer patient data for all types of studies (clinical, epidemiological, translational, pharmacological, etc.) and research, without revealing the patients’ identities.

  • Looking for experts
    NEWS 01 March 2021

    Looking for experts

    We are looking for an expert in information technology/computer science/data science for supporting the development of the European Platform on Rare Disease Registration (EU RD Platform).

  • Launch of the EU RD Platform
    NEWS 28 February 2019

    Launch of the EU RD Platform

    The European Platform on Rare Disease Registration (EU RD Platform) was launched on Rare Disease Day 2019.