Overview Report

The new Overview Report on the State of the Art of Rare Disease activities in Europe is available now: ‘State of the Art’ Overview Report 2018

  • Published July 2018, the report contains 13 sections, as follows:  
    • Political Framework for rare diseases in Europe
    • Political Framework at European Member State Level
    • Political Framework in Other World Regions
    • Expert Services in Europe: Centres of Expertise
    • Expert Services in Europe: European Reference Networks
    • Expert Services in Europe: Expert Clinical Laboratories
    • Rare Disease Registries
    • Rare Disease Research Highlights
    • Orphan Medicinal Products
    • Patient Advocacy for Rare Diseases
    • Orphanet
    • Parliamentary Advocates for Rare Diseases Network
    • Rare 2030 – Participatory Foresight in Rare Diseases Policy


The 2016 version of the ‘State of the Art’ Overview Report 2017 was published July 2017



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