January 2017 EURORDIS Leaflet

Other resources


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.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases