Our advocacy activities

Today, more than half of new national policies, laws and regulations stem from EU policies, directives and regulations. Since Eurordis represents rare disease patients from all over Europe (an estimated 30 million patients), it is at the European Union level that it can most effectively influence policy makers.

Eurordis therefore focuses the bulk of its advocacy activities at EU level. From time to time, however, and in close cooperation with its members, it also performs advocacy actions at individual Member States’ level.

Eurordis mainly targets the institutions governing the European Union, with a special focus on the European Commission and the European Parliament. The Council being the only EU body representing national interests, advocacy efforts towards the Council are most effective at national level and are performed in cooperation between Eurordis and its members.

In the European Commission, the most relevant Directorates General (DGs) for rare disease patients are:

• DG Health and Consumer Protection (DG SANCO), dealing with Health Policy, including health information, health determinants, health system and medical care, and rare diseases;
• DG Research, which develops and manages the Framework Programmes of Research and Development including rare diseases and genetics;
• DG Enterprise, dealing with the pharmaceutical policy of the EU, including orphan drugs, paediatric medicines, advanced therapies and medical devices.

Eurordis is also exploring opportunities with other Directorates General, such as DG Social Affairs (including disability issues), DG Information Society, DG Regional Policy and DG Education and Culture.

The advocacy activities of Eurordis are varied.
They include tasks such as:

• Identifying key priorities for the rare disease community;
• Influencing EU decision-makers on these key priorities;
• Writing position papers on key issues for the European rare disease community and disseminating these papers widely to regulatory authorities and decision makers at EU level;
• Monitoring relevant EU policies and writing reports for members;
• Speaking at, or attending meetings and forums of interest to rare disease patients to voice their viewpoint;
• Establishing and maintaining contacts with key decision-makers in the relevant EU institutions;
• Establishing and maintaining good working relationships with other umbrella organisations in the health sector;
• Organising conferences and events at EU level to raise rare diseases as a public health issue;
• Improving Eurordis’ visibility in the European health arena;
• Expanding and diversifying financial resources for Eurordis and its members by identifying new funding opportunities.

Author: Eurordis
Photo credits: congress © Clarita Natoli; The Berlaymont © Gemma Lougheed; Hands together © despair.com