About ERDERA
To leave no one behind, over 170 organisations championed by the European Union and members states are working hand in hand to make Europe a world leader in rare diseases research and innovation. The European Rare Disease Research Alliance (ERDERA) takes over EJPRD to deliver concrete health benefits to rare disease patients in the next decade by advancing prevention, diagnosis and treatment research.
Our Mission
Unify knowledge, resources and expertise
ERDERA brings under one roof a broad range of high-value services, resources and cross-disciplinary expertise to support rare disease research projects across Europe, from planning and design to efficient execution.
Boost clinical research with and for patients
Enabling every consenting patient living with a rare disease to be findable and enrolled in a suitable clinical study that matches their needs and preferences is a core goal in ERDERA. Empowered patients can contribute to the generation of high-quality evidence to improve diagnosis, understanding of diseases and develop treatments.
Spur innovation and EU competitiveness
The new partnership aims to make Europe a global leader in rare disease research by increasing investment to spur innovation, aligning regional, national and European research strategies, and fostering collaboration among all stakeholders at global scale.
Standing on the shoulders
of EJP RD
The field of rare diseases has seen significant progress over the last ten years, largely due to the efforts of the European Joint Programme for Rare Diseases (EJPRD) and similar initiatives. These efforts have advanced research, clinical applications, and international collaborations, while also increasing patient involvement. We encourage you to explore the various tools, resources, and results produced by EJP RD.
Our pillars
Patients play a crucial role in ERDERA by guiding research, participating in studies, and helping to understand the impact of rare diseases for informing policy decisions.
ERDERA will provide financial support to collaborative international research projects, clinical trials, and initiatives for knowledge exchange and networking.
Encompassing all ERDERA’s in-house research activities, the Clinical Research Network will enhance diagnostics and clinical trial readiness, help assess the impact of rare diseases and support the development of advanced therapies.
ERDERA will expand EJPRD’s Virtual Platform to enhance global data collection, integration, analysis, and sharing. It will incorporate case studies from the Clinical Research Network and funded projects, and link with other infrastructures to boost research capabilities and efficiency for stakeholders such as patient organizations, industrial partners, policymakers, and researchers.
This includes an Expertise Services Hub offering guidance and support on various elements of translational and clinical research, as well as an Acceleration Hub. This will collaborate with industry partners to expedite the advancement of most promising research projects and technologies.
Building upon the educational resources and activities of EJPRD, ERDERA will carry on providing an extensive programme that includes both existing and new modules. This programme is aimed at individuals across all stakeholder groups, including patients, with various levels of expertise.
Through existing and newly established National Mirror Groups, the partnership will ensure alignment between national and international rare disease research strategies, particularly in countries that are behind in developing and implementing national plans.
Our Roadmap
