ERDERA

What ERDERA does

ERDERA (European Rare Diseases Research Alliance) is a publicly funded European research partnership launched in September 2024 under the European Union's Horizon Europe programme (grant agreement N°101156595), coordinating more than 170 public and private organisations across 37 countries to accelerate rare disease research. The partnership addresses a fragmented landscape of 6,000-8,000 rare diseases affecting over 30 million people in Europe, where diagnostic delays average five years and individual patient populations are typically too small for any single country to study effectively. ERDERA unifies funding, clinical research, data infrastructure, training, and policy alignment under a single alliance that builds on the legacy of the predecessor EJP RD programme.

The alliance operates as an integrated ecosystem of services rather than a single product. Its core technology layer is the Rare Diseases Virtual Platform, a FAIR-compliant digital infrastructure that integrates patient registries, biobanks, genomic-phenomic and multi-omics repositories, knowledge bases, and research tools, with the RD Discovery Portal providing unified search and the RD-Connect Genome-Phenome Analysis Platform enabling variant interpretation and diagnostic reanalysis. Research services include the Clinical Research Network (linking European clinical centres), the Data Hub (FAIR data management), Expertise Services (ethics, regulatory, IP, and study operations support), the Accelerator (helping researchers develop investor-ready projects), the Learning Portal (training courses, webinars, and workshops), and International Alignment through National Mirror Groups. Funding mechanisms comprise Joint Transnational Calls and the Clinical Trial Call, with up to €30 million allocated to the 2026 Clinical Trial Call for multinational early-phase interventional trials, administered centrally by Fondazione Telethon.

ERDERA's business model is non-commercial: services are provided free of charge to eligible researchers, clinicians, patient organisations, and policymakers from member countries, with the core coordination team of 14 employees operating from Paris and Brussels. The alliance hosts the IRDiRC Scientific Secretariat, partners with EURORDIS, Orphanet, EATRIS, ECRIN, the European Reference Networks, and the JARDIN Joint Action, and embeds patient and public involvement as co-designers, implementers, and evaluators throughout the research lifecycle.

Name

ERDERA

Legal name

European Rare Diseases Research Alliance

Website

https://erdera.org

Company type

Private

Founded year

2024

Operating status

Operating

Headcount range

11–50 employees

Short description

ERDERA (European Rare Diseases Research Alliance) is an EU Horizon Europe–funded partnership coordinating 170+ organisations across 37 countries to deliver funding, clinical trials, FAIR data infrastructure, training, and policy alignment for rare disease research.

Ownership category

akta.pro rank

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices2 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Infrastructure

Revenue model

1. EU Horizon Europe Funding: ERDERA receives funding from the European Union's Horizon Europe research and innovation programme under grant agreement N°101156595, bringing together public and private funding to support rare disease research across Europe.
2. International Co-funding: ERDERA is co-funded by participating countries and organisations, pooling resources from multiple nations to advance rare disease research.
3. Clinical Trial Call Funding: Up to €30 million budget dedicated to Clinical Trial Call 2026, administered by Fondazione Telethon on behalf of the ERDERA consortium. Individual project budgets expected in the range of €1 million to €5 million.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels7 records

Core offering

ERDERA is a European research partnership that coordinates, funds, and supports rare disease research across Europe through an integrated set of services: collaborative funding calls (Joint Transnational Calls and the multinational Clinical Trial Call), a Virtual Platform for FAIR-compliant access to rare disease data resources, the ERDERA Learning Portal for training, the ERDERA Clinical Research Network for trial coordination, the Data Hub for data stewardship, the Accelerator for funding-readiness support, and Expertise Services spanning ethics, regulatory, data, and patient involvement.

Product overview

ERDERA (European Rare Diseases Research Alliance) is a partnership of over 170 public and private organisations across 37 countries, operating as a unified research ecosystem rather than a traditional software product. The core offerings include: the Rare Diseases Virtual Platform (VP) as the foundational data ecosystem connecting registries, biobanks, and multi-omics repositories; the RD Discovery Portal as the search interface for VP resources; the ERDERA Learning Portal providing educational courses and resources; the Data Hub for FAIR data management; the Accelerator for helping researchers develop funding-ready proposals; Expertise Services for tailored expert support; Clinical Research Network for trial infrastructure; International Alignment through National Mirror Groups; and major funding mechanisms including Joint Transnational Calls and the Clinical Trial Call (ECTC). Supporting tools include the Innovation Management Toolbox, Rare Diseases Clinical Trials Toolbox, and ERDERA Tracker. The ecosystem is designed to unify rare disease research across Europe from diagnosis through treatment development.

Differentiator

Problem solved

Functional benefit

Products and services

• Clinical Trial Call (ECTC) Funding opportunity for multinational early-phase interventional clinical trials (Phase I, Phase I/II, Phase II) of medicinal products in rare diseases, with up to €30 million budget administered by Fondazione Telethon on behalf of the ERDERA consortium using a centralised funding framework.
• Joint Transnational Calls Collaborative funding calls that pool public and private funding from multiple countries to support transnational rare disease research projects.
• Rare Diseases Virtual Platform (VP) Ecosystem of data resources and services for rare diseases, integrating patient registries, biobanks, genomic-phenomic and multi-omics repositories, resource catalogues, knowledge bases, and research tools following FAIR principles.
• RD Discovery Portal Search portal for the Virtual Platform network allowing users to discover and analyse data resources in real time by disease name, gene, Orphacode, ICD-10 code, OMIM, or gene symbol.
• ERDERA Learning Portal European learning hub bringing together courses and resources for researchers, clinicians, patient representatives, policymakers, and industry professionals covering patient advocacy, clinical research skills, omics and data science, innovation and entrepreneurship, and policy ethics and regulation.
• ERDERA Data Hub Service focused on turning connected, FAIR data and digital tools into actionable insights for rare disease research, including support for data quality, governance, and stewardship.
• ERDERA Accelerator Helping researchers prepare funding applications and develop investor-ready rare disease projects, supporting translation of promising research into commercially viable solutions.
• Expertise Services Tailored expert support across the research journey, including ethics and regulatory guidance, data readiness, patient involvement, intellectual property, and study operations.
• ERDERA Clinical Research Network Links Europe's clinical research community to share data, speed up trials, and prepare the path to advanced therapies for rare diseases, integrating with European Reference Networks.
• International Alignment Connecting countries and partners worldwide to strengthen collaboration, including National Mirror Groups (NMGs) and support for underrepresented regions in rare disease research.

Quantifiable outcome

• Over 30 million people in Europe affected by rare diseases served by the partnership
• +2 more outcomes

Named customers4 records

Segments5 records

Ideal customer profiles5 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability7 records

Feature6 records

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Fondazione TelethoncoreStrategic or Co-development Partner · 1 July 2026Fondazione Telethon administers the Clinical Trial Call on behalf of the ERDERA consortium using a centralised funding model with one common funding framework rather than parallel national funding processes.
• European Reference Networks (ERNs)coreStrategic or Co-development Partner24 European Reference Networks connecting specialised healthcare centres across the EU play a key role in ERDERA's clinical research activities, dissemination of treatments, and integration with national healthcare systems.
• EURORDIS – Rare Diseases EuropecoreStrategic or Co-development PartnerEURORDIS is a key partner in ERDERA, championing patient-centred innovation, co-organising events like ECRD, and providing leadership on patient involvement and advocacy.
• IRDiRC (International Rare Diseases Research Consortium)coreStrategic or Co-development PartnerERDERA hosts the IRDiRC Scientific Secretariat, strengthening the science-policy interface worldwide and aligning with IRDiRC's global rare disease research roadmap.
• EATRIS (European Research Infrastructure for Translational Medicine)coreStrategic or Co-development PartnerEATRIS leads the Cell & Gene Therapy Development School within ERDERA's training programme and contributes to translational research ecosystems.
• ECRIN (European Clinical Research Infrastructure Network)coreStrategic or Co-development PartnerECRIN leads the Management of Multinational Trials training within ERDERA and supports delivery of clinical trials across borders.
• JARDIN Joint ActioncoreStrategic or Co-development PartnerJARDIN Joint Action works to disseminate and integrate ERN findings and treatments into policy and clinical practice across EU Member States, Norway, and Ukraine.
• RealiseD ProjectminorStrategic or Co-development PartnerRealiseD (Innovative Health Initiative project) focuses on methodological and operational approaches for clinical trials in ultra-rare diseases, with tools intended to be tested within ERDERA.
• TEDDY NetworkminorStrategic or Co-development PartnerTEDDY Network coordinates child-friendly workshops and contributes to ERDERA's training for young advocates, empowering adolescents to contribute to study design.
• Critical Path Institute (C-Path)minorStrategic or Co-development PartnerCritical Path Institute contributes to ERDERA training activities, particularly in workshop sessions involving young advocates on paediatric study designs.
• Institut ImagineminorStrategic or Co-development PartnerInstitut Imagine in Paris led the ERDERA Training for Young Advocates for Rare Diseases in April 2026, hosting the training programme.
• National Mirror Groups (NMGs)coreStrategic or Co-development PartnerNMGs are multi-stakeholder national hubs established in ERDERA countries to strengthen rare disease research and policy alignment, bringing together authorities, researchers, funders, healthcare providers, and patient organisations.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Orphanet: European reference portal for rare diseases and orphan drugs, providing nomenclature (Orphacodes), disease classifications, and epidemiological data. Directly comparable to ERDERA's discovery and knowledge-base offerings, and a declared ERDERA partner.
• European Reference Networks (ERN): 24 EU-wide networks of healthcare providers specializing in rare disease diagnosis and care. Closely aligned with ERDERA's clinical research network and a declared core partner, sharing overlapping institutional members and patient cohorts.
• European Joint Programme on Rare Diseases (EJP RD): Direct predecessor programme to ERDERA, also coordinated across Europe to align rare disease research, funding, and data resources. ERDERA explicitly builds on EJP RD's infrastructure and partner network, making it the closest historical and operational analogue.
• EURORDIS – Rare Diseases Europe: Alliance of over 1,000 rare disease patient organizations across Europe. Directly comparable in mission (patient-led rare disease advocacy and research participation) and a declared core partner of ERDERA, including joint events such as ECRD.
• IRDiRC (International Rare Diseases Research Consortium): Global consortium coordinating rare disease research policy and funding across >60 member organizations. ERDERA hosts IRDiRC's Scientific Secretariat and shares the same coordinating-function profile at international scale.
• RD-Connect: Integrated platform linking rare disease registries, biobanks, and genomic data — substantially absorbed into ERDERA's Virtual Platform. Closely comparable as a genomic-phenomic data infrastructure for rare disease research.
• Critical Path Institute (C-Path): Public-private partnership developing regulatory tools and consortia for rare and neglected diseases. Directly comparable as a multi-stakeholder rare disease research accelerator and a declared ERDERA training partner.
• ECRIN (European Clinical Research Infrastructure Network): Pan-European infrastructure supporting multinational clinical trials. Directly comparable in clinical trial coordination capability and a declared ERDERA training and delivery partner.
• EATRIS (European Research Infrastructure for Translational Medicine): European research infrastructure providing translational medicine services and training across member institutions. Directly comparable as a pan-European research alliance with overlapping training and infrastructure roles, and a declared ERDERA partner.

Broad incumbents

• NIH NCATS Office of Rare Diseases Research: U.S. federal coordinating body for rare disease research, providing grants, training, and information resources. Comparable in mission as a publicly funded rare disease research coordinator, but operates at national rather than multinational scale.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/ERDERA_org
• YouTubeyoutube.com/@ERDERA
• Facebookfacebook.com/ERDERAeu
• LinkedInlinkedin.com/company/erdera
• Instagraminstagram.com/erdera_org

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ERDERA