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