The EURORDIS Policy Fact Sheets empower patient advocates to participate in key rare disease policy development processesMay 2013
The EURORDIS Policy Fact Sheets are designed to empower rare disease patient advocates by providing an easy-to-use informational tool that facilitates participation in the process of developing national and European policies. As such, the Policy Fact Sheets serve as reference documents, and contain concise summaries of the key elements 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. The Policy Fact Sheets can help patient advocates to contribute actively to the process of implementing these key recommendations into the rare disease national plans and strategies being developed across the European Union Member States, as well as toward shaping other policies.
EURORDIS has added three new Policy Fact Sheets to its growing repertoire: one on Newborn Screening and two others on the Specialised Social Services, particularly Adapted Housing Services and Resource Centres. Other Policy Fact Sheets have recently been revised and updated, including those on Rare Disease Patient Registries, Orphanet, Centres of Expertise, National Rare Disease Help Lines, European Network of Rare Disease Help Lines, Respite Care Services and Therapeutic Recreation Programmes.
Each of the EURORDIS Policy Fact Sheets describes why the topic is important and necessary to people living with a rare disease, how to address the issue, related matters, and useful references. The information contained in the Fact Sheets is complemented by related articles, documents and reference materials available on the EURORDIS website. Many of the issues are further explored during the annual EURORDIS Membership Meetings, where targeted workshops provide a venue for the exchange of knowledge and ideas.
Consult the full list of the freely downloadable and printable Policy Fact Sheets and other related materials.
Louise Taylor, Communications and Development Writer, EURORDIS