The European partnership for rare diseases, uniting more than 170 public and private organisations across 37 countries
Welcome to ERDERA
Explore the Virtual Platform!
Access standard-compliant resources, registries, biobanks, and tools ready to advance rare disease research
Build the skills to shape the future of rare disease research!
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 Funding
Bringing public and private funding together to close knowledge gaps and drive rare disease research forward
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
The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?
Multimedia
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
Shaping the future of rare disease research: insights from ERDERA
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 session will introduce the workstream’s activities in data sharing, systematic diagnostic reanalysis, advanced diagnostic pipelines, and genomic and multi-omics innovation.
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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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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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