Process for writing Eurordis position papers

Position papers are an essential tool for rare disease patient advocacy at EU level. They express the viewpoint of rare disease patients as a whole and are disseminated to regulatory authorities to influence decisions to be made, in the interest of patients.

Eurordis' position papers are adopted by the Eurordis Public Affairs Committee. Position papers are the official voice of a group of people and, as a consequence, seek consensus. In the absence of a consensus, they express the viewpoint of the majority of the group. It does not mean that every person belonging to the group agrees with the position expressed. Eurordis represents European rare disease patients at large. It is therefore important that minority views have the opportunity to be heard. This can happen during the drafting of a position paper; in such cases, the Eurordis Board of Directors is the ultimate decision maker. Minority views are recorded in Eurordis' public forums and discussions.

Position papers can be published at various moments in time: when an issue needs a special focus or is controversial; when European authorities launch a public consultation; when a future policy, programme, directive, or regulation is being drafted; or when Eurordis' members have a pressing issue to bring to the attention of EU decision makers and stakeholders concerned by the issue.

The process for writing a Eurordis position paper is described below:

Flow-chart image. Please allow time for download. Text version is below.

Text version of the process for writing a Eurordis position paper:

Phase 1: First steps

• Decide to issue a position paper: Eurordis' Advocacy Group
• (including CEO, General Secretary, European Public Affairs) -->
• Create a drafting group : Members of EPAC, Specialists on the issue at stake, Staff -->
• Write the first draft -->
• Send first draft to EPAC for feedback -->
• Incorporate feedback

Phase 2: Incorporate feedback-- three possible paths

Sometimes:

• Public consultation -->
• Member consultation-->
• Finalise position paper

If there are no divergent opinions

• Finalise position paper

If there are divergent opinions

• CEO or President arbitrates -->
• Board of Directors arbitrates -->
• Finalise position paper

Phase 3: Finalise position paper

• Final agreement & Adoption of the position paper
• Disseminate position paper to members, EU authorities and stakeholders

Author: Eurordis
Graphics: © Eurordis