CIBER Enfermedades Raras

What CIBER Enfermedades Raras does

CIBERER (Centro de Investigación Biomédica en Red de Enfermedades Raras) is a publicly funded Spanish biomedical research consortium founded in 2006 and headquartered in Madrid, designated as the national reference network for rare disease research within the CIBER framework under the Instituto de Salud Carlos III (ISCIII) and the Ministerio de Ciencia e Innovación. The consortium coordinates 5 disease-group research programs (Neurological and Neuromuscular Diseases; Mitochondrial and Inherited Metabolic Medicine; Developmental Pathology; Sensorineural Pathology; Hereditary Cancer, Hematological Diseases, and Other Rare Diseases) and 2 transversal programs (Omics and Computational Biology; Therapeutic Discovery), drawing on more than 40 affiliated research groups across Spanish universities, hospitals, and research institutes plus linked clinical groups (Grupos Clínicos Vinculados) within the Spanish National Health System.

Its core technology consists of shared research infrastructure including the CIBERER Biobank for biological samples, ENOD (Undiagnosed Rare Diseases Programme), the GENRARE genomic platform, the Collaborative Spanish Variant Server, the METILPREC methylation signature database, and MAPER, an interactive map of rare disease research projects in Spain. The consortium runs distributed internal funding mechanisms (ACCI cooperative actions, PROMETER grants for young researchers, mobility grants, training courses) and participates in European initiatives including OD4RD3, EJP RD, ORPHANET, and BIER.

CIBERER does not generate commercial revenue from product or service sales. Its economic model is managed public institutional funding: appropriations flow from the Spanish Ministry of Science and Innovation through ISCIII, supplemented by minor co-sponsorship from entities such as Boehringer Ingelheim and Fundación Sabadell. Its "customers" are research groups, linked clinical groups in the National Health System, and the rare disease patient population of more than 3 million people in Spain, all served free of charge. Governance rests on a Consejo Rector, Comité de Dirección, Comisión Permanente, External Scientific Advisory Committee, and a Patient Advisory Council (Consejo Asesor de Pacientes), positioning CIBERER as a public research infrastructure rather than a commercial entity.

Name

CIBER Enfermedades Raras

Legal name

CONSORCIO CENTRO DE INVESTIGACIÓN BIOMÉDICA EN RED

Website

https://ciberer.es

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

51–100 employees

Short description

CIBERER is a publicly funded Spanish biomedical research consortium, founded 2006 and based in Madrid, that coordinates over 40 research groups across universities and hospitals to advance rare disease research, diagnostics, and therapy translation.

Ownership category

akta.pro rank

Headquarters

HQ city

Madrid

HQ country

Spain

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Infrastructure, Others

Revenue model

1. Public Institutional Funding: CIBERER is a public consortium (Consorcio Centro de Investigación Biomédica en Red) funded primarily through government appropriations from the Instituto de Salud Carlos III (ISCIII) and the Ministerio de Ciencia e Innovación. The consortium does not operate as a commercial entity generating revenue from product sales. Funding supports research programs, training, platforms, and infrastructure.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels7 records

Core offering

CIBERER is a Spanish public biomedical research consortium that coordinates a national network of research groups focused on rare diseases. It provides research infrastructure, biobank services, genetic databases, and specialized platforms to support translational research, clinical diagnostics, and orphan drug development across multiple disease areas.

Product overview

CIBERER (Centro de Investigación Biomédica en Red de Enfermedades Raras) is a networked biomedical research consortium focused exclusively on rare disease research in Spain. The organization operates as a platform-based structure comprising 5 thematic research programs (Neurological and Neuromuscular Diseases, Mitochondrial and Inherited Metabolic Medicine, Developmental Pathology, Sensorineural Pathology, and Hereditary Cancer & Hematological Diseases) plus 2 transversal programs (Omics and Computational Biology, and Therapeutic Discovery). CIBERER provides shared research infrastructure including the CIBERER Biobank, ENOD (Undiagnosed Rare Diseases Programme), GENRARE genomic platform, Collaborative Spanish Variant Server, and METILPREC methylation database. Additional offerings include MAPER (interactive map of rare disease research in Spain), training programs, mobility grants, and collaborative funding mechanisms (ACCI). The organization functions as part of the broader CIBER (Centro de Investigación Biomédica en Red) network under the Instituto de Salud Carlos III.

Differentiator

Problem solved

Functional benefit

Products and services

• Biobanco (Biobank)
• ENOD Platform
• GENRARE A genetic research platform focused on rare diseases that supports genetic analysis, data sharing, and genomic investigation across CIBERER research groups.
• MAPER A research support platform within the CIBERER infrastructure that assists research groups in the study and management of rare disease cases.
• Variant Server A database that catalogs genetic variants associated with rare diseases, providing researchers with reference data for genetic interpretation and diagnosis.
• METILPREC A research platform supporting the study of methylation and epigenetic factors in rare diseases across CIBERER's research groups.
• ORPHATRANS A translational research service focused on supporting the development of orphan drugs and therapies for rare diseases within the CIBERER network.
• Orphan Drug Information Service (Medicamentos Huérfanos) Information and advisory service providing guidance on orphan drug designation, development, and regulatory pathways for rare disease therapies.
• Rare Disease Research Programs (Programas de Investigación) Coordinated research programs covering cancer susceptibility and genetic syndromes, neurological and neuromuscular diseases, renal diseases, cardiovascular and sensory pathology, congenital endocrine and metabolic disorders, plus two transversal programs in medical genetics, pharmacogenetics, pharmacogenomics, advanced therapies, animal models, biobanks, and therapeutic resources.
• Biomedical Training (Formación Biomédica) Educational and training services in biomedical research and rare diseases, including access to a biomedical training platform for researchers and clinicians.
• Innovation and Knowledge Transfer (Transferencia e Innovación) Service supporting the transfer of research findings, valorization of intellectual property, and innovation activities arising from CIBERER's rare disease research programs.
• Rare Disease Information Service (Servicio de Información sobre EE.RR) Information and orientation service on rare diseases, providing guidance on available resources, research, and clinical pathways to patients, families, and professionals.

Quantifiable outcome

• Over 3 million people with rare diseases in Spain benefit from coordinated national research
• +2 more outcomes

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration7 records

Feature6 records

Partnerships

13 partnerships are on record, tiered core, major and minor.

• Instituto de Salud Carlos III (ISCIII)coreStrategic or Co-development PartnerThe ISCIII is the primary public funding body for CIBERER. CIBERER is part of the CIBER network which operates under the ISCIII's thematic areas, and the ISCIII provides the institutional framework for the consortium's competitive funding calls and annual reporting.
• Ministerio de Ciencia e InnovacióncoreStrategic or Co-development PartnerThe Ministry of Science and Innovation provides overarching institutional support and policy direction for CIBERER as part of Spain's national research infrastructure.
• CIBERNED (CIBER de Enfermedades Neurodegenerativas)majorStrategic or Co-development PartnerCIBERNED and CIBERER co-organize the Neuro&Rare 2026 Joint Scientific Meeting, fostering interdisciplinary collaboration between rare disease and neurodegenerative disease research groups. This is the first joint scientific meeting between the two networks.
• CIBER-BBN (CIBER de Bioingeniería, Biomateriales y Nanomedicina)majorStrategic or Co-development PartnerCIBERER and CIBER-BBN jointly run the NanoTER program (up to €200,000 per call) supporting collaborative projects on advanced therapies based on non-viral vectors for rare diseases.
• ORPHANETmajorTechnology or IntegrationCIBERER is linked to ORPHANET, the European reference portal for rare disease information and expertise, through its 'Other Resources' platform section.
• BIER (Base de Investigación en Enfermedades Raras)majorTechnology or IntegrationBIER is listed as a key resource platform for CIBERER, providing access to rare disease research data and expertise within the Spanish research ecosystem.
• EJP RD (European Joint Programme on Rare Diseases)majorStrategic or Co-development PartnerCIBERER participates in EJP RD, a European-coordinated program for rare disease research, including hosting training courses organized by EJP RD (e.g., Training on strategies to foster solutions of undiagnosed rare disease cases in Rome, 2023).
• OD4RD3 (European Project on Interoperability in Rare Diseases)majorStrategic or Co-development PartnerThe OD4RD3 European project aims to drive interoperability in rare diseases with the backing of CIBERER, supporting the integration of Spanish rare disease data into European networks.
• COSCE (Confederación de Sociedades Científicas de España)coreStrategic or Co-development PartnerCIBERER has adhered to the COSCE Transparency Agreement on Animal Experimentation, promoted by COSCE with collaboration from EARA (European Association for Research Animal), demonstrating commitment to transparent animal research practices.
• EARA (European Association for Research Animal)minorStrategic or Co-development PartnerEARA collaborates with COSCE on the Transparency Agreement on Animal Experimentation, to which CIBERER is a signatory.
• Spanish Consortium Institutions (Instituciones Consorciadas)coreStrategic or Co-development PartnerCIBERER is a consortium of Spanish research institutions including universities, hospitals, and research centers. The consortium structure enables coordinated research across institutions under shared governance (Consejo Rector, Comité de Dirección, Permanent Commission).
• MAPER - Mapa de las Enfermedades Raras Investigadas en EspañacoreOthersMAPER is the interactive map of rare disease research projects in Spain, developed by CIBERER with funding support, providing a comprehensive national overview of ongoing rare disease research.
• REDTRANSFERminorStrategic or Co-development PartnerREDTRANSFER organizes training courses (e.g., 'Explotación de resultados de I+D y tecnologías para personal investigador') supported by CIBERER's Training Programme.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Market position

Competitive moat5 records

Key highlights1 record

Customer concentration

• LinkedInlinkedin.com/company/ciber-enfermedades-raras

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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