ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases)

What ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) does

ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases) is a publicly funded, non-profit European Reference Network established in 2017 and coordinated by Assistance Publique - Hôpitaux de Paris (AP-HP), with additional coordination offices at CUB-Hôpital ERASME in Brussels and University Hospital Vall d'Hebron in Barcelona. As one of 24 ERNs approved by the ERN Board of Member States and supported by the European Commission, the network operates under an EU-mandated role to improve diagnosis, treatment, and cross-border care for patients with rare hematological diseases across EU/EEA member states, serving an addressable population of roughly 30 million Europeans living with rare diseases.

The network's core technological platform comprises three products: (1) the Clinical Patient Management System (CPMS), a pan-European tele-expertise platform used by 122 ERN-EuroBloodNet users across 18 EU countries with 52 expert panels opened for virtual case consultations, now upgraded to CPMS 2.0 with mobile applications; (2) ENROL (European Rare Blood Disorders Platform), a structured disease registry platform aggregating patient data across European centers; and (3) EDU Blood Academy, an educational platform offering EBAH-accredited webinars, preceptorships, and e-learning courses for healthcare professionals and patients. These are complemented by clinical guidelines, Disease Cards, the Patients Assistance Info Point for cross-border healthcare navigation, and ePAG (European Patient Advocacy Group) advocacy channels.

The business model is non-commercial and grant-funded: services are provided at no direct cost to healthcare providers or patients, with revenue derived from European Commission ERN support program funding and participation in funded research consortia including ERDERA, ERICA, GenoMed4All, HELIOS, IMPACT-AML, INHERENT, SYNTHEMA, EDITSCD, and RealiseD. The go-to-market model is community-led network coordination rather than commercial sales, with healthcare providers joining as institutional members, patient organizations represented through ePAGs, and outreach conducted through professional conferences (EHA, ASH, ECRD, ASCAT), accredited webinars, and EURORDIS-aligned advocacy channels. The network's competitive position is anchored by its EU regulatory mandate, which is not replicable by private actors.

Name

ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases)

Legal name

European Reference Network on Rare Hematological Diseases (ERN-EuroBloodNet)

Website

https://eurobloodnet.eu

Company type

Public

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

ERN-EuroBloodNet is a publicly funded European Reference Network, established in 2017 and coordinated by AP-HP, that connects hematology specialists, patients, and researchers across EU member states via the CPMS tele-expertise platform, the ENROL disease registry, and the EDU Blood Academy to improve care for rare hematological diseases.

Ownership category

akta.pro rank

Product category

Rare Disease Healthcare Network

NAICS

Medical and Diagnostic Laboratories (6215), Medical Laboratories (621511)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Medical Laboratories (8071)

akta.pro primary industry

Transfusion Medicine & Immunohematology (Blood Bank) (HLAFAMAG)

akta.pro secondary industry

Blood Bank, Transfusion Medicine & Immunohematology (HLAHAAAH)

Keywords

• Rare hematological diseases
• Reference networks
• Tele-expertise consultations
• Patient disease registries
• Cross-border healthcare

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices3 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. EU Grant Funding: European Commission funding through ERN support programs. The network is one of 24 European Reference Networks approved by the ERN Board of Member States and supported by the European Commission.
2. Research Project Grants: Participates in funded research consortia including ERDERA, ERICA, GenoMed4All, HELIOS, IMPACT-AML, INHERENT, SYNTHEMA, EDITSCD, and RealiseD projects.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

ERN-EuroBloodNet is a European Reference Network that coordinates cross-border healthcare, tele-expertise consultations, patient registries, clinical guidelines, and education for rare hematological diseases across EU member states. It connects 122 healthcare professionals across 18 EU countries via the Clinical Patient Management System (CPMS) and the ENROL patient registry platform, supported by the EDU Blood Academy for health professional training.

Product overview

ERN-EuroBloodNet operates as a network of excellence rather than a commercial product company, providing a coordinated suite of digital services for rare hematological diseases across 24 EU Member States. The core offerings include the Clinical Patient Management System (CPMS) for virtual case consultations, the ENROL platform for patient registries and data collection, and the EDU Blood Academy for education. These are complemented by Disease Cards, clinical guidelines, the Patients Assistance Info Point for cross-border healthcare navigation, and ePAG advocacy groups. The network connects healthcare providers, patients, and researchers across Europe to improve diagnosis, treatment, and care for rare blood disorders.

Differentiator

Problem solved

Functional benefit

Brands

• EDU Blood Academy: Educational platform providing webinars, preceptorships, e-learning, and training courses for health professionals and patients on rare hematological diseases
• CPMS (Clinical Patient Management System)
• ENROL (European Rare Blood Disorders Platform)
• CPMS 2.0

Products and services

• Clinical Patient Management System (CPMS) A pan-European tele-expertise platform enabling healthcare professionals to discuss complex rare hematological disease cases through virtual panels. Currently used by 122 ERN-EuroBloodNet users across 18 EU countries with 52 panels opened.
• ENROL (European Rare Blood Disorders Platform) A comprehensive European platform for patient registries and data collection on rare hematological diseases. Includes disease registries, dataset management, and data request services for research purposes.
• EDU Blood Academy Educational platform offering webinars, preceptorships, e-learning courses, and training programs for both patients and healthcare professionals on rare hematological diseases. Includes EBAH-accredited Thursdays Webinars series, e-Learning for Rare Anaemias, and Anaemias Training on RBC Morphology.
• Disease Cards Digital resource providing information on rare hematological diseases, accessible to healthcare professionals and patients.
• Guidelines and Clinical Decision-Making Tools (CDMTs) Clinical guidelines and Clinical Decision-Making Tools (CDMTs) developed by ERN-EuroBloodNet experts, including guidelines on Burkitt lymphoma diagnosis and treatment, and external quality assessment programs.
• Patients Assistance Info Point Cross-border healthcare assistance service helping patients navigate healthcare systems in Europe by mediating among National Contact Points for Cross-Border Care and hospital administration. Provides information on cross-border procedures, healthcare provider expertise, and treatment access.
• European Patient Advocacy Group (ePAG) Patient advocacy representation within ERN-EuroBloodNet, connecting patient organizations and ensuring patient voices are integrated into network governance and activities.

Quantifiable outcome

• 122 CPMS users across 18 EU countries
• +3 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration10 records

AI capability8 records

Feature3 records

Partnerships

15 partnerships are on record, tiered core and major.

• Assistance Publique - Hôpitaux de Paris (AP-HP)coreStrategic or Co-development PartnerAP-HP serves as the coordinating entity for ERN-EuroBloodNet, hosting the main coordinating center at Hôpital St Louis / Université Paris 7. AP-HP provides institutional infrastructure and leadership for the network's pan-European operations.
• CUB-Hôpital ERASME (Brussels)coreStrategic or Co-development PartnerPart of the coordination team, contributing to network operations and management from Brussels, Belgium.
• University Hospital Vall d'Hebron (Barcelona)coreStrategic or Co-development PartnerVall d'Hebron Research Institute hosts part of the coordination team and serves as key partner in Spanish healthcare system integration.
• European CommissioncoreStrategic or Co-development PartnerPrimary funder and supporter of all 24 European Reference Networks, providing mandate and operational support through DG SANTE.
• EURORDIS-Rare Diseases EuropecoreStrategic or Co-development PartnerCollaboration on patient advocacy, Rare Barometer surveys, Open Academy programs, and rare disease policy initiatives. ePAG representatives participate in ERN-EuroBloodNet governance.
• European Hematology Association (EHA)coreStrategic or Co-development PartnerAnnual congress collaboration with dedicated ERN-EuroBloodNet booth, oral/poster sessions, and Board of Network meetings. Joint educational webinars on hematology topics.
• European Reference Networks (all 24)coreStrategic or Co-development PartnerERN-EuroBloodNet collaborates with all 24 ERNs on cross-cutting initiatives, shared platforms, and rare disease ecosystem development including ERNcare4Ua humanitarian response.
• ERDERA (European Rare Diseases Research Alliance)coreStrategic or Co-development PartnerSuccessor to EJP RD; ERN-EuroBloodNet participates in joint transnational calls, clinical trial initiatives, and research coordination through ERDERA.
• ERICA (European Rare Disease Research Coordination)majorStrategic or Co-development PartnerCollaboration on clinical research coordination, drug repurposing workshops, and ERN research conferences.
• GenoMed4AllmajorTechnology or IntegrationAI in hematology training program; ERN-EuroBloodNet collaborates on educational content for artificial intelligence applications in rare hematological diseases.
• RealiseD ProjectmajorStrategic or Co-development PartnerIHI-funded public-private partnership optimizing clinical trials for ultra-rare diseases; ERN-EuroBloodNet participates in survey initiatives and webinar series.
• HELIOS ProjectmajorStrategic or Co-development PartnerResearch action advancing education, research, and equity in hemoglobinopathies (sickle cell disease and thalassemia) across Europe and beyond.
• IMPACT-AMLmajorStrategic or Co-development PartnerHorizon Europe project developing STREAM real-world data platform for relapsed/refractory Acute Myeloid Leukemia.
• European Haemophilia Consortium (EHC)majorStrategic or Co-development PartnerJoint Topic on Focus webinar series on bleeding disorders; collaboration on European VWD Awareness Day activities.
• ISLH (International Society for Laboratory Hematology)majorStrategic or Co-development PartnerJoint Topic on Focus webinar program on rare coagulation disorders.

Scale indicators6 records

Recent moves6 records

Expansion highlights7 records

Regional players

• NORD (National Organization for Rare Disorders): U.S. rare disease umbrella organization that mirrors EURORDIS's and the ERN ecosystem's role in advocacy, education, and research. Comparable in mission and patient advocacy scope, though operating in the United States rather than the EU.
• Thalassaemia International Federation (TIF): International non-profit focused on thalassemia and other hemoglobinopathies with educational, advocacy, and patient support functions overlapping ERN-EuroBloodNet's coverage of red blood cell disorders. Comparable as a disease-specific advocacy and education organization, though with global rather than EU-only remit.

Direct peers

• Orphanet: European reference portal for rare diseases and orphan drugs that, like ERN-EuroBloodNet, is a publicly funded pan-European infrastructure serving rare disease knowledge, classification, and clinical decision support. Directly comparable mandate as a public-good data/knowledge resource.
• EURORDIS-Rare Diseases Europe: European alliance of rare disease patient organizations that co-governs the ERN ecosystem alongside ERN-EuroBloodNet. Directly comparable as the umbrella rare disease network that co-signed the 2023 Open Letter to EU institutions and partners with ERN-EuroBloodNet on ePAG patient advocacy and Rare Barometer surveys.
• European Haemophilia Consortium (EHC): European patient-led umbrella organization for haemophilia and bleeding disorders that co-runs Topic on Focus webinars with ERN-EuroBloodNet. Directly comparable as a rare hematological disease advocacy and education partner with overlapping membership and audience.
• ERDERA (European Rare Diseases Research Alliance): Successor to EJP RD and a pan-European research coordination alliance in which ERN-EuroBloodNet participates. Highly comparable as a pan-European collaborative platform for rare disease research funding, joint calls, and clinical trial coordination.
• ERN-EYE (European Reference Network on Rare Eye Diseases): Another of the 24 European Reference Networks with parallel structure to ERN-EuroBloodNet, including CPMS tele-expertise panels, educational programs, and EU-mandated cross-border care coordination. Highly comparable in operating model and EU institutional positioning.
• ERN-EuroNMD (European Reference Network for Rare Neuromuscular Diseases): One of the 24 European Reference Networks operating under the same EU regulatory framework and funding structure as ERN-EuroBloodNet. Directly comparable in governance model, CPMS usage, ENROL-style registry operations, and cross-border healthcare coordination.

Broad incumbents

• NHS Blood and Transplant: UK national blood and transplant service providing transfusion medicine and immunohematology services. Comparable in the operational domain of blood disorders and immunohematology, though it operates as a national service provider rather than a cross-border clinical coordination network.
• European Hematology Association (EHA): Pan-European professional hematology society that ERN-EuroBloodNet partners with at the annual EHA Congress. Comparable as a broader professional/community organization in hematology but with a wider scope that includes all hematology (not just rare diseases) and operates as a member society rather than a care network.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/ERNEuroBloodNet
• YouTubeyoutube.com/channel/UC7011seQKL7STmLpWPmUFig
• Facebookfacebook.com/Eurobloodnet-European-Reference-Network-on-Rare-Hematological-Diseases-109982323921110
• LinkedInlinkedin.com/company/eurobloodnet-european-reference-network-on-rare-hematological-diseases

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 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 ERN-EuroBloodNet (European Reference Network on Rare Hematological Diseases)