The European partnership for rare diseases, uniting more than 170 public and private organisations across 37 countries
Welcome to ERDERA
Ensuring that people living with rare diseases are involved as co-designers, implementers, and evaluators of research
ERDERA's Public and Patient Involvement and Engagement (PPIE)
Build the skills to shape the future of rare disease research!
WS Funding
Bringing public and private funding together to close knowledge gaps and drive rare disease research forward
WS Clinical Research Network
Linking Europe’s clinical research community to share data, speed up trials, and prepare the path to advanced therapies
WS Data Hub
Turning connected, FAIR data and digital tools into actionable insights for rare disease research
WS Expertise Services
Tailored expert support at every stage of the research journey
WS Accelerator
Helping promising ideas become investor-ready projects
WS Training
Building skills for the future of rare disease research, from the lab to leadership and innovation
WS International Alignment
Connecting countries and partners worldwide to strengthen collaboration and support underrepresented regions
Our pledge to the over 30 million people living with a rare disease in Europe
ERDERA Survey
Exploring consultancy needs for rare disease research
LATEST
News & Updates
ERDERA Policy Brief: European Biotech Act
Multimedia
Aligning Countries for Rare Disease Research | ERDERA meeting in Sofia
ERDERA interview with Bojana Mirosavljevic, rare disease patient advocate from Serbia and founder and president of Život/Life.
The Health Research Podcast – Ep 6: Rare Disease Research
Victoria Hedley explains the role of National Mirror Groups in the rare disease research ecosystem
ERDERA
Research Services
our mission
Goals & Impacts
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 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.
Upcoming Events
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The training responds to the growing need for patient advocates to understand data management, ethical considerations and the role of AI in rare disease research.
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The next ECRD will take place on 3–4 June 2026 in Prague under the title “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”.
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More than 280 speakers from industry, regulators, patient organisations, investors and healthcare providers, and aims to showcase new science, technologies and policies that can accelerate orphan drug development and improve access to therapies for people living with rare conditions.
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The two-day event will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention, diagnosis, and treatment.
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ERDERA will launch its Clinical Trial Call 2026 (ECTC) on 1 July 2026, which will support multinational, GCP‑compliant early‑phase interventional clinical trials in the field of rare diseases. This call […]
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The World Orphan Drug Congress is the largest orphan drug & rare disease meeting of its kind across the globe. From cell and gene therapy, genetic testing, and market access, to real world […]
NEWSLETTER
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