Science to policy
Translating scientific evidence into rare disease policy
ERDERA is firmly committed to broadening access to knowledge and ensuring that valuable research findings are widely shared across the rare disease ecosystem. Through the careful synthesis of key scientific evidence and its alignment with major European and international policy frameworks, ERDERA produces policy briefs that act as an indispensable resource. These documents are designed to support well‑informed decision‑making at every relevant level, from local and national authorities to European institutions and global stakeholders.
In addition to guiding policy discussions, these briefs showcase the significant relevance and far‑reaching impact of ERDERA’s activities. They also underscore the importance and societal value of the research projects supported and funded by ERDERA throughout Europe, highlighting how this work contributes to a deeper understanding of rare diseases and fosters improved outcomes for patients, families, and healthcare systems alike.
Why is this relevant?
ERDERA's impact on policy
Shaping policy with evidence-based research
As a co-funded European partnership bringing together 180 public and private partners to advance research and innovation, ERDERA plays an important role at the science–policy interface in rare diseases, health and wider European competitiveness. Policy briefs help explain the relevance of research findings and knowledge to ongoing policy debates, and support ERDERA in articulating its position on proposed policy or regulatory changes, particularly at European level.
Alongside these explanatory briefs, ERDERA’s governance structure also supports the development of specific policy recommendations. In November 2025, following endorsement by the ERDERA Governing Board, the ERDERA Policy Think Tank was established as a neutral platform for evidence-based policy discussion and analysis, aligned with the European legislative calendar to help anticipate policy impacts.
The Think Tank aims to support ERDERA’s objectives by addressing policy issues on which the knowledge and experience of the ERDERA community — including researchers, clinicians, patients and policymakers — together with external stakeholders, can make a meaningful contribution. It is co-led by two chairs, one from the Governing Board and one from the Multistakeholder Advisory Board, and its work is carried out by a Steering Group of nine ERDERA members representing a range of internal stakeholder groups. Its activities are guided by a roadmap covering key policy areas such as data and clinical trials. The Think Tank is expected to hold two workshops each year, bringing together members and external experts to develop recommendations that translate research, knowledge and existing policy tools into concrete action. These recommendations will be submitted to the ERDERA Governing Board for endorsement before being shared with policymakers and other external stakeholders.
From policy to practice
Name of the policy brief
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Relevant publications
Recent updates
“National Mirror Groups are essentially a bridge — bringing European developments, standards and opportunities to clinicians and researchers.”
Countries step up joint approaches to rare disease research at first in person ERDERA National Alignment Board meeting
