ERN eUROGEN

What ERN eUROGEN does

ERN eUROGEN is a European Reference Network (ERN) approved by the European Commission in March 2017 and coordinated by Radboud University Medical Center (Radboudumc) in Nijmegen, Netherlands. It is one of 24 EU-designated ERNs focused on the diagnosis, treatment, and long-term care of rare and complex uro-recto-genital diseases. The network connects 56 healthcare providers across EU/EEA member states, operating across three workstreams covering rare congenital uro-recto-genital anomalies (e.g., DSDs, bladder exstrophy, posterior urethral valves, anorectal malformations), functional conditions requiring highly specialised surgery (e.g., pelvic floor disorders, interstitial cystitis, transgender surgery), and rare uro-recto-genital tumours (e.g., penile, testicular, adrenal). Core technical assets include the Clinical Patient Management System (CPMS 2.0) for cross-border virtual multidisciplinary team consultations, a patient registry built on the CASTOR EDC platform tracking outcomes over 15-20 years and interoperable with all 24 ERN registries, and clinical practice guidelines with Clinical Decision Support Tools.

The network is not a commercial entity and has no commercial revenue. It is funded by the European Union through the EU4Health Programme, with the European Commission committing €77 million in direct grants to ERNs (2023-2027) plus an €18+ million Member State integration action, within a broader €5.1 billion EU4Health envelope (2021-2027). Services to healthcare providers and patients are free. Governance is by the ERN Board of Member States, with strategic support from clinical societies (EAU, ESPU, ICS, ESSIC, EUPSA), patient advocacy (EURORDIS via ePAG), sibling ERNs (ERNICA, ITHACA, ERKNet, GENTURIS), and research alliances (EJP RD, ERDERA, ERICA, ARM-Net). Go-to-market is community-led: expertise travels across borders rather than patients, and member providers can refer cases into CPMS for expert review.

Name

ERN eUROGEN

Legal name

ERN eUROGEN

Website

https://eurogen-ern.eu

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

ERN eUROGEN is a European Reference Network coordinating 56 healthcare providers across EU/EEA to improve diagnosis, treatment, and care for rare and complex uro-recto-genital diseases via virtual consultations, a longitudinal patient registry, clinical guidelines, and training.

Ownership category

akta.pro rank

Product category

Rare Disease Healthcare Network

NAICS

Offices of Physicians (62111)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Offices & Clinics Of Doctors Of Medicine (8011)

akta.pro primary industry

Health Systems Strengthening & Universal Health Coverage (UHC) Partnerships (HLAJAOAL)

akta.pro secondary industries

Virtual Specialty Care Platforms (tele-stroke, tele-ICU, tele-derm, tele-cardiology) (HLALABAD), Health Systems Strengthening & Universal Health Coverage (UHC) (BPADAIAE)

Keywords

• Rare disease networks
• Urology reference network
• Virtual clinical consultations
• Patient registry services
• Multidisciplinary care coordination

Headquarters

HQ city

Nijmegen

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. EU4Health Programme Funding: European Reference Networks are funded by the European Union through the EU4Health Programme. ERNs receive direct grants to support their operations, coordination, and activities.

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

ERN eUROGEN provides healthcare services for uro-recto-genital rare diseases through the European Reference Network, connecting 56 healthcare providers across EU/EEA via virtual multidisciplinary consultations (CPMS), a long-term patient outcomes registry, evidence-based clinical guidelines and decision support tools, a clinical training and webinar programme, and multilingual patient information resources. Services are delivered free to patients and providers, funded by the European Union through the EU4Health Programme.

Product overview

ERN eUROGEN is a European Reference Network (ERN) approved by the European Commission, coordinated by Radboudumc in Nijmegen, Netherlands, focused on rare uro-recto-genital diseases and complex conditions requiring highly specialised surgery. The network provides a unified platform comprising virtual MDT consultations via the Clinical Patient Management System (CPMS), a sustainable patient registry tracking long-term outcomes (15-20 years), clinical practice guidelines and decision support tools, a comprehensive webinar and training programme, and patient information resources. The network operates through three dedicated workstreams: Workstream 1 (Rare Congenital Uro-Recto-Genital Anomalies), Workstream 2 (Functional Uro-Recto-Genital Conditions requiring highly specialised surgery), and Workstream 3 (Rare Uro-Recto-Genital Tumours), connecting over 56 healthcare providers across the EU/EEA, patient advocates (ePAG), and supporting partner organisations.

Differentiator

Problem solved

Functional benefit

Products and services

• Clinical Patient Management System (CPMS) Virtual Consultations IT platform enabling multidisciplinary virtual consultations between ERN eUROGEN healthcare providers across Europe for patient diagnosis, treatment planning, and post-operative support, including transition from paediatric to adult care. Features include video meetings with recording capability and a structured case management workflow.
• ERN eUROGEN Patient Registry Registry collecting long-term patient outcomes data over 15-20 years using the CASTOR EDC platform, interoperable across all 24 ERNs to strengthen the evidence base, support research, and enable comparison of care across European centres. Supports automatic data extraction from Electronic Health Records.
• Clinical Practice Guidelines and Clinical Decision Support Tools (CDST) Evidence-based clinical guidelines and clinical decision support tools (CDST) developed by ERN eUROGEN for rare uro-recto-genital conditions including anorectal malformations (ARM), posterior urethral valves (PUV), neurogenic bladder, and bladder inflammatory diseases.
• ERN eUROGEN Webinar Programme Regular webinar series covering paediatric colorectal surgery, anorectal malformations, rare urological conditions, and complex surgeries. Joint presentations with ERN ERNICA, ESPU, EUPSA, and ESSIC. Includes ARM webinar series and sessions on BPS/IC management.
• Training and Education Programme Comprehensive training including online courses (paediatric colorectal surgery), exchange programmes for clinicians, cross-ERN workshops (MMC, LUTO), and EJP RD training on undiagnosed rare disease cases. ERN eUROGEN was the highest achieving ERN in the EC's pilot Exchange Programme (March 2021 to January 2023) with 82 exchange packages used.
• Patient Information Resources Patient education materials including ARM patient journey brochure, VACTERL resources, DSD information video, Duplex Congenital Malformations resources in multiple languages (English, French, German, Spanish), and animations developed with EAU Patient Office.

Named customers2 records

Segments2 records

Ideal customer profiles2 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration3 records

Feature2 records

Partnerships

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

• RadboudumccoreStrategic or Co-development Partner · 1 May 2026Radboudumc (Radboud University Medical Center) in Nijmegen, Netherlands serves as the coordinating institution for ERN eUROGEN. The network is coordinated by Prof. Peter Mulders with support from Prof. Wout Feitz and the coordination team.
• ERN GENTURIScoreStrategic or Co-development Partner · 1 May 2026ERN GENTURIS (rare genetic tumour risk syndromes) is another ERN coordinated by Radboudumc, with shared expertise and collaboration between both networks demonstrated during the EC visit in May 2026.
• European Commission (DG SANTE)coreStrategic or Co-development Partner · 9 March 2017ERN eUROGEN is approved by the ERN Board of Member States and funded by the European Union. The European Commissioner for Health and Food Safety officially awarded certificates to ERN Coordinators at the 3rd Conference on ERNs in Vilnius, Lithuania.
• European Association of Urology (EAU)coreStrategic or Co-development PartnerEAU provides scientific, clinical and educational excellence supporting ERN eUROGEN, with over 16,000 members. Prof. Chris Chapple (Secretary General of EAU) was the first Coordinator of eUROGEN.
• European Society for Paediatric Urology (ESPU)majorStrategic or Co-development PartnerESPU supports ERN eUROGEN webinars and educational activities, providing expertise in paediatric urology conditions.
• EURORDISmajorStrategic or Co-development PartnerEURORDIS supports the European Patient Advocacy Group (ePAG) within ERN eUROGEN and contributes to mental health initiatives and patient partnership frameworks.
• International Continence Society (ICS)majorStrategic or Co-development PartnerICS collaborates with ERN eUROGEN on educational content and guidelines related to bladder and pelvic floor conditions.
• ESSICmajorStrategic or Co-development PartnerESSIC (International Society for the Study of Bladder Pain Syndrome) collaborates with ERN eUROGEN on bladder pain syndrome guidelines and educational webinars.
• ERN ERNICAmajorStrategic or Co-development PartnerERN ERNICA collaborates on ARM webinars, Hirschsprung's disease research, and cross-ERN training workshops on anorectal malformations.
• ERN ITHACAmajorStrategic or Co-development PartnerERN ITHACA collaborates on spinal dysraphism and related conditions, including joint workshops and training on myelomeningocele (MMC) and spina bifida.
• ARM-Net ConsortiummajorStrategic or Co-development PartnerARM-Net Consortium focuses on anorectal malformations and collaborates on courses, guidelines, and patient information resources.
• European Paediatric Surgeons' Association (EUPSA)majorStrategic or Co-development PartnerEUPSA supports ARM webinars and educational activities, providing expertise in paediatric surgical conditions.
• OMNI-Net UkrainemajorStrategic or Co-development PartnerOMNI-Net Ukraine works with ERN eUROGEN on research and care for birth defects in radiation-exposed populations, supporting Ukraine capacity building.
• International Federation for Spina Bifida and Hydrocephalus (IFSBH)majorStrategic or Co-development PartnerIFSBH collaborates on webinars and support for Ukrainian patients with spina bifida and hydrocephalus.
• CureforUmajorStrategic or Co-development PartnerCureforU is a global monthly case discussion platform for rare and complex paediatric colorectal and urogenital conditions. ERN eUROGEN clinicians contribute as expert advisors, with Prof. Wout Feitz participating in 30 sessions.
• European Joint Programme on Rare Diseases (EJP RD)majorStrategic or Co-development PartnerEJP RD funds training activities, research mobility fellowships, and trans-ERN workshops on rare disease topics.
• ERN ERKNetmajorStrategic or Co-development PartnerERN ERKNet (rare kidney diseases) collaborates on shared patients and research, particularly for posterior urethral valves (PUV) cases.
• European Rare Diseases Research Alliance (ERDERA)majorStrategic or Co-development PartnerERDERA provides research funding opportunities, networking support schemes, and connections to the Virtual Platform for data sharing.
• ERICAmajorStrategic or Co-development PartnerERICA coordinates ERN research and innovation activities, with joint workshops on registries and rare disease research.
• JARDIN Joint ActionminorStrategic or Co-development PartnerJARDIN Joint Action focuses on integration of ERNs into national health systems.

Scale indicators5 records

Recent moves8 records

Expansion highlights5 records

Direct peers

• EURORDIS - Rare Diseases Europe: EURORDIS is the pan-European alliance of rare disease patient organisations, supporting the ePAG model across all ERNs including ERN eUROGEN. It is a direct peer in the rare-disease ecosystem with overlapping mission, EU funding, and stakeholder base.
• ERN GENTURIS: ERN GENTURIS focuses on rare genetic tumour risk syndromes and is also coordinated out of Radboudumc in Nijmegen, sharing the same coordination infrastructure as ERN eUROGEN. Direct ERN peer with identical EU funding, CPMS, and registry model.
• ERN ITHACA: ERN ITHACA covers rare congenital malformations and intellectual disability, including spina bifida and myelomeningocele (MMC) — conditions overlapping with eUROGEN's urological scope. Co-runs cross-ERN workshops and training on shared patient populations.
• ERN ERKNet: ERN ERKNet is the European Reference Network for rare kidney diseases, collaborating with ERN eUROGEN on shared patients such as posterior urethral valves (PUV). Operates under the same ERN framework with CPMS, registry, and EU4Health funding.
• Orphanet: Orphanet is the EU-funded reference portal for rare diseases and orphan drugs, providing the nomenclature, ontology, and directory of expert centres that underpins all ERN activity including eUROGEN. Operates under similar EU public-health mission with comparable funding profile.
• European Rare Diseases Research Alliance (ERDERA): ERDERA (formerly EJP RD) is the EU-funded partnership coordinating rare disease research funding, training, and the Virtual Platform for data sharing across ERNs. ERN eUROGEN is a participating network, making ERDERA a close peer in the European rare-disease research ecosystem.
• ERN ERNICA: ERN ERNICA is the European Reference Network for rare inherited and congenital anomalies (digestive and gastrointestinal), sharing the same ERN governance, EU4Health funding, CPMS platform, and cross-ERN collaboration model as ERN eUROGEN. The two networks co-host webinars (e.g., ARM series) and exchange expertise on anorectal malformations.

Broad incumbents

• European Association of Urology (EAU): EAU is the pan-European professional society for urology with 16,000+ members and the scientific/educational partner that helped launch eUROGEN. It is a broader incumbent shaping guidelines, training, and congress activity overlapping with eUROGEN's mission.
• European Reference Networks (DG SANTE): The European Commission's DG SANTE oversees all 24 ERNs, providing the policy framework, CPMS infrastructure, and EU4Health funding that ERN eUROGEN operates within. It is the broader incumbent authority defining the strategic direction in which eUROGEN executes.

Others

• Radboudumc (Radboud University Medical Center): Radboudumc hosts the ERN eUROGEN coordination team and also coordinates ERN GENTURIS. It is the institutional backbone and employer of eUROGEN's coordination staff, providing clinical, research, and administrative infrastructure for the network.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/ern_eurogen
• YouTubeyoutube.com/@ERNeUROGEN
• Facebookfacebook.com/ERNeUROGEN
• LinkedInlinkedin.com/company/ern-eurogen
• Instagraminstagram.com/ern_eurogen

Revenue estimate

Valuation estimate

Number of profiles

Profiles9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ERN eUROGEN