Position Papers
A position paper describes an organisation's recommendations concerning a political issue, legislation or a European directive. In the context of its advocacy work in favour of rare diseases, Eurordis regularly publishes position papers on rare disease and orphan drug topics.
Fact Sheets and infographics
Empowering the voice of patients in policy making at national and EU levels
Patients are active participants in the policy making process. EURORDIS has created specific Policy Fact Sheets to help rare disease patients and organisations better advocate issues of importance with national and/or European policy decision makers.
How can patient advocates use these Policy Fact Sheets?
The Policy Fact Sheets provide concise summaries of key policy issues delineated in the European Commission's Communication on Rare Diseases: Europe's Challenges and the Council Recommendation on an action in the field of rare diseases. They are designed to serve as reference documents. Other EURORDIS documents, including Position papers, Concept papers, and Statements, are also useful for patient advocacy purposes.
EURORDIS Round Table of Companies Workshop documents
The EURORDIS Round Table of Companies (ERTC) holds regular workshops, bringing together stakeholders to discuss topics relevant to the development of orphan drugs and other treatments for rare diseases.