Better PreventionDiagnosisTreatment

This is our pledge to 30+ million people
living with a rare disease in Europe

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.

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Our Mission

Scientists

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.

Examining patients

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.

European Union flag & Research

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.

EJP RD

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

Living with Rare

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.

Funding

ERDERA will provide financial support to collaborative international research projects, clinical trials, and initiatives for knowledge exchange and networking.

Clinical Research

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.

Data Services Hub

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.

Translational Research Services

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.

Training & Education

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.

International Alignement

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

  • Enabling patient-need led science by providing a rare diseases research support pipeline from basic research to clinical trial readiness
  • Improve understanding of rare diseases impact and the potential benefit of new interventions.
  • Combining financing of research by public and private funders.
  • Building on existing infrastructures encompassing ERDRI, the EJP RD Virtual Platform, RD-Connect, and services not specific for rare diseases (e.g., BBMRI-ERIC).
  • Promoting advanced data analysis and data interpretation methods and approaches (both federated and centralised) that exploit this ecosystem.
  • Enhancing the development of data-driven computational tools, statistical and AI methods, as well as digital solutions to understand the diseases progression, to solve undiagnosed rare disease cases and implement new clinical studies or trials designs for small populations.
  • Ensuring an inclusive route and sufficient resources to empower those affected by a rare disease and their representatives as equal partners in research, involving them in all governance and implementation stages of ERDERA, offering training or orientation as needed.
  • Establishing a structured and flexible framework for patient engagement in research (including funding).
  • Building new or expanding existing networks and supporting dedicated research to address inequities in the study of various types of rare diseases.
  • Enabling stakeholders participating in projects financed through ERDERA competitive calls of performing in house research activities to upgrade their scientific, technology and regulatory knowledge through capacity building activities.
  • Providing and accredited, comprehensive and high-quality online education programme for rare disease researchers, using existing modules and developing new ones.
  • Stepping up the integration of industry, regulators and payers into the existing rare disease community.
  • Expanding the rare diseases research network and opportunities to more countries and stakeholders, attracting more resources, know-how and talent.
  • Facilitating the adoption of good practices at the national and regional level through rare diseases National Mirror Groups (NMGs).
  • Ensuring coherence and impact of all actions through adequate coordination, governance and advisory structures…
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