Epicare ERN

What Epicare ERN does

EpiCARE ERN is a publicly funded European Reference Network, established in 2017 and co-funded by the European Commission, that coordinates diagnosis, treatment, and collaborative research for rare and complex epilepsies across 24 of 27 EU member states plus Norway, with supporting medical teams in Bulgaria, Greece, Ireland, Switzerland, and the UK. The network is composed of 61 accredited medical teams of experts — part of a wider ecosystem of more than 900 highly specialised healthcare teams — and operates as a coordination body rather than a commercial entity, with services provided free of charge to patients and clinicians.

Its core technology stack centres on the Clinical Patient Management System (CPMS) for secure cross-border case discussions, the centralised EpiREG Registry held at KU Leuven for standardised clinical, genetic, neuroimaging, and EEG data collection, and the EpiCARE Genetic Epilepsies Platform (Discovery Nexus) for collaborative research on novel genes. Supporting infrastructure includes thematic working groups (clinical trials, genetics, registries, targeted therapies), educational webinars, the EPAG patient advocacy component, and emerging AI-based computer vision tools for brain lesion detection in Tuberous Sclerosis Complex. Technical integrations include REDCap for electronic data capture, Zoom for webinars, Sendinblue for GDPR-compliant newsletters, and the broader European Commission ERN Collaborative Platform.

The business model is non-commercial: EpiCARE receives co-funding from the European Commission (DG SANTE) and operates under the governance of the ERN Board of Member States, with administrative coordination managed by Hospital Sant Joan de Déu in Barcelona since October 2023 under Professor Dr. Alexis Arzimanoglou. Customer segments are patients with rare and complex epilepsies, healthcare professionals (neurologists, paediatric neurologists, epileptologists), and patient advocacy organisations; none of these are paying customers. Strategic partners include ILAE, EURORDIS, ECET, EAN, EPNS, KU Leuven, and multiple other European Reference Networks.

Name

Epicare ERN

Legal name

EpiCARE ERN

Website

https://epi-care.eu

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

11–50 employees

Short description

EpiCARE is a publicly funded European Reference Network, established in 2017 and co-funded by the European Commission, that coordinates diagnosis, treatment, and collaborative research for rare and complex epilepsies across 24 EU countries plus Norway, connecting 61 accredited expert medical teams through digital collaboration and registry platforms.

Ownership category

akta.pro rank

Product category

Rare disease healthcare coordination network

NAICS

Religious, Grantmaking, Civic, Professional, and Similar Organizations (813), Business Associations (813910)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

eCOA/ePRO/eDiary & Patient-Facing Data Collection (HLACAOAB)

Keywords

• Rare epilepsy care
• Clinical patient management
• Epilepsy research registry
• Cross-border healthcare coordination
• Epilepsy clinical trials

Headquarters

HQ city

Bron

HQ country

France

HQ region

Europe

Offices4 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Distribution channels3 records

Marketing channels11 records

Core offering

EpiCARE is a European Reference Network that coordinates specialized care for rare and complex epilepsies across Europe, connecting 61 accredited medical teams in 24/27 EU countries plus Norway. It delivers cross-border case discussions via the Clinical Patient Management System (CPMS), maintains the centralized EpiREG patient registry at KU Leuven, and operates the Discovery Nexus Genetic Epilepsies Platform for collaborative research. The network also runs educational webinars, training programs, and the EPAG patient advocacy group to support patients and clinicians across 26 European countries.

Product overview

EpiCARE ERN is a European Reference Network for rare and complex epilepsies, functioning as a coordination network rather than a traditional software product. The network's offerings consist of interconnected services: the EpiREG Registry for standardized clinical data collection across Europe; the EpiCARE Genetic Epilepsies Platform (Discovery Nexus) for collaborative genetic research; Case Discussions via CPMS for cross-border clinical consultations; specialized Working Groups addressing topics from clinical trials to genetics; Educational Webinars and training for healthcare professionals; and the EPAG patient advocacy group. These services collectively enable the network's mission of improving care for rare diseases by connecting over 900 highly specialized healthcare teams across 24 EU countries plus Norway.

Differentiator

Problem solved

Functional benefit

Products and services

• EpiREG Registry Centralised European registry held at KU Leuven, Belgium, for standardised clinical data collection across the EpiCARE network. Supports sub-registries and common data elements for collaborative research on rare and complex epilepsies, and is used by clinicians and researchers contributing to rare epilepsy studies.
• EpiCARE Genetic Epilepsies Platform (Discovery Nexus) Online platform for collaborative research on genetic epilepsies, facilitating the study of novel genes and connecting centres across Europe involved in genetic epilepsy research. Used by clinicians and researchers at EpiCARE member centres.
• Case Discussions (CPMS) Cross-border case discussion platform enabling healthcare professionals to consult on complex patient cases through the Clinical Patient Management System. Targeted at clinicians treating patients with rare and complex epilepsies across EpiCARE member centres.
• Educational Webinars and Training Programs Regular webinar programming covering topics such as ASM treatment, early-career epilepsy expert training, and specialised clinical topics for network members. Includes the EPIPED three-year training cycle in Girona and the Rare and Complex Epilepsy Academy virtual sessions. Targeted at healthcare professionals and early-career epilepsy experts.
• EPAG (European Patient Advocacy Group) Patient advocacy component of EpiCARE connecting patient associations, providing support, and disseminating relevant information to the rare and complex epilepsy community. Operates the CREA Alliance and runs a dedicated EPAG newsletter. Targeted at patient representatives and rare epilepsy associations.

Quantifiable outcome

• ERNs connect expert centres across countries to share knowledge and improve care for patients with rare and complex diseases
• +1 more outcomes

Segments3 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration4 records

AI capability5 records

Feature4 records

Partnerships

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

• Hospital Sant Joan de Déu BarcelonacoreStrategic or Co-development Partner · 1 January 2017Since October 2023, administrative coordination of EpiCARE was entrusted to Hospital Sant Joan de Déu in Barcelona under the leadership of Professor Dr. Alexis Arzimanoglou. The hospital serves as the coordinating healthcare provider (CHP) for the European Reference Network.
• European Rare Diseases Research Alliance (ERDERA)majorStrategic or Co-development PartnerCross-ERN research partnership focused on pre-clinical therapy studies for rare diseases. ERDERA is launching Joint Transnational Calls for Proposals on rare disease therapies.
• Together4RDmajorStrategic or Co-development PartnerCross-ERN collaborative initiative for rare disease research coordination across European networks.
• Discovery Nexus Genetic PlatformmajorTechnology or IntegrationPlatform developed specifically for collaborative research on novel genes within the EpiCARE community. Hosts the EpiCARE Genetic Epilepsies Platform.
• RealiseD ProjectmajorStrategic or Co-development PartnerIHI RealiseD project bringing together ~40 partners to optimise and accelerate development of treatments for rare and ultra-rare conditions. EpiCARE contributes to clinical trial methodology improvements.
• International League Against Epilepsy (ILAE)coreStrategic or Co-development PartnerEpiCARE workshops are endorsed by ILAE. Collaborative sessions on epilepsy care, clinical guidelines, and education. ILAE European Regional Board meetings hosted at EpiCARE facilities.
• European Consortium for Epilepsy Trials (ECET)majorStrategic or Co-development PartnerInitiative to overcome challenges in epilepsy clinical trials, developing tools and methodologies for rare epilepsy research.
• JARDIN ProjectmajorStrategic or Co-development PartnerJoint Action on integration of ERNs into national healthcare systems, working to embed EpiCARE services within Member State healthcare structures.
• EURORDISmajorStrategic or Co-development PartnerCollaboration with rare disease patient organisation network, including open letter calling on EU to uphold commitment to ERNs and rare disease patients.
• Other European Reference Networks (ERN-ITHACA, MetabERN, EURO-NMD, ERN-RND, ERN-EYE, VASCERN)majorStrategic or Co-development PartnerCross-ERN collaboration on shared rare disease challenges. Joint webinars (e.g., COL4A1/A2 disorders with ERN-EYE and VASCERN), shared exhibition booths at congresses, and collaborative research initiatives.
• European Academy of Neurology (EAN)majorStrategic or Co-development PartnerEpiCARE sessions and presence at EAN Congresses. Collaboration on scientific symposia and education for neurologists across Europe.
• European Paediatric Neurology Society (EPNS)majorStrategic or Co-development PartnerActive participation at EPNS Congresses with ERN exhibition booth and collaborative sessions on paediatric neurology and rare epilepsies.
• KU LeuvencoreTechnology or IntegrationEpiREG centralised registry held at KU Leuven, Belgium, enabling standardised data collection across EpiCARE member centres.
• OVHminorOthersWebsite hosting by OVH – OVH Groupe SAS, company registered in Lille, France. Technical infrastructure partner.
• SendinblueminorOthersGDPR-compliant email service provider used for EpiCARE newsletters distribution.

Scale indicators11 records

Recent moves6 records

Expansion highlights5 records

Others

• Orphanet: Reference database and information portal for rare diseases used by both clinicians and patients. EpiCARE relies on and contributes to Orphanet's 'Revised Orphanet Summaries', making Orphanet a closely coupled enabling peer in the rare-epilepsy information value chain.
• EURORDIS (Rare Diseases Europe): Umbrella patient organisation for all rare diseases across Europe. EpiCARE works with EURORDIS on joint advocacy (including a co-signed open letter to the EU on ERNs), positioning EURORDIS as an enabling ecosystem partner rather than a direct competitor.

Broad incumbents

• International League Against Epilepsy (ILAE): Global professional organisation covering all epilepsies, not just rare ones. EpiCARE workshops are ILAE-endorsed and ILAE just awarded EpiCARE its 2026 European Epilepsy Team Excellence Award, indicating ILAE is the broader incumbent in the same clinical and research domain.
• European Paediatric Neurology Society (EPNS): European professional society for paediatric neurology. EpiCARE has active EPNS Congress presence and a joint exhibition booth; EPNS covers the broader paediatric neurology space in which rare paediatric epilepsies sit.
• European Academy of Neurology (EAN): Pan-European neurology professional society with which EpiCARE collaborates on scientific symposia and EAN Congress sessions. EAN operates as a much broader incumbent across all neurology, of which rare epilepsies are a subset.

Regional players

• American Epilepsy Society (AES): US-based professional society for clinicians and researchers in epilepsy. Operates in the same clinical and research domain as EpiCARE but is geographically focused on North America, making it the most relevant regional comparator.

Direct peers

• MetabERN (European Reference Network for Rare Metabolic Diseases): One of the 24 European Reference Networks co-funded by the European Commission. Operates the same accreditation, CPMS case discussion, and registry-based model as EpiCARE, differing only by therapeutic area (rare metabolic vs. rare epilepsies).
• VASCERN (European Reference Network for Rare Multisystemic Vascular Diseases): Another of the 24 European Reference Networks operating the identical ERN model. EpiCARE and VASCERN have run joint webinars (e.g., COL4A1/A2 disorders) and shared exhibition booths, making VASCERN a directly comparable ERN peer.
• ERN-RND (European Reference Network for Rare Neurological Diseases): Sister European Reference Network operating under the identical EU ERN framework for rare neurological diseases. Shares the same co-funding mechanism, CPMS-based cross-border consultations, and accreditation model, making it the most structurally comparable peer to EpiCARE.
• ECET (European Consortium for Epilepsy Trials): EpiCARE's named strategic partner in epilepsy clinical trial methodology. ECET focuses specifically on rare epilepsy trials and shares both the target patient population and the cross-European coordinating function, making it a direct, epilepsy-specific peer.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/EpiCARE_ERN

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Epicare ERN