Vascern

Name

Vascern

Legal name

VASCERN - The European Reference Network On Rare Multisystemic Vascular Diseases

Website

https://vascern.eu

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Healthcare Coordination Services for Rare Diseases

NAICS

Professional, Scientific, and Technical Services (541)

SIC

Services-Health Services (8000), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Neurogenetics & Rare Neurologic Diseases (HLAKAIAO)

Keywords

• Rare disease networks
• Vascular disease care
• Clinical decision support
• Cross-border healthcare
• Medical training programs

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. EU4Health Programme Funding: Primary funding source from the European Union's EU4Health Programme supporting project coordination, dissemination, evaluation, and training activities
2. National and Regional Government Contributions: Additional funding from French government and member institutions receiving support from their respective national and regional governments
3. Collaborative Research Grants: Participates in various collaborative projects and research initiatives receiving grants from multiple sources including universities, research organizations, and healthcare networks across Europe

Go-to-market motion1 record

Distribution channels1 record

Marketing channels7 records

Core offering

VASCERN is a European Reference Network that coordinates 48 expert teams across 19 EU Member States to improve diagnosis, treatment, and research for rare multisystemic vascular diseases. It operates the Clinical Patient Management System (CPMS) for secure cross-border case discussions, runs six Rare Disease Working Groups, and delivers clinical decision support tools, training programs, and patient registries. Its services are provided free of charge to healthcare providers and patients across Europe.

Product overview

VASCERN is a European Reference Network (ERN) for Rare Multisystemic Vascular Diseases established in 2017 as a non-profit initiative. The network operates as a coordination and collaboration platform rather than a traditional product company. Its core offerings include the Clinical Patient Management System (CPMS) for secure cross-border case discussions among healthcare professionals, six Rare Disease Working Groups (HHT, HTAD, MSA, NEUROVASC, PPL, VASCA) focused on specific rare vascular diseases, and Clinical Decision Support Tools including guidelines, outcome measures, and patient pathways. Additional offerings include Training and Education programs (e-Learning, Webinars, Summer School), Patient Registries for data collection, and Transversal Working Groups addressing cross-cutting issues. The ERN Collaborative Platform (ECP) provides the underlying infrastructure for network collaboration.

Differentiator

Problem solved

Functional benefit

Products and services

• Clinical Patient Management System (CPMS) A secure, GDPR-compliant IT platform supervised by the European Commission's DG SANTE that enables healthcare professionals from different EU countries to collaborate on complex rare vascular disease cases, share de-identified patient data, conduct virtual multidisciplinary panels, and access a built-in medical imaging viewer.
• Rare Disease Working Groups (RDWGs) Six specialized working groups covering Hereditary Haemorrhagic Telangiectasia (HHT), Heritable Thoracic Aortic Diseases (HTAD), Medium Sized Arteries (MSA), Neurovascular Diseases (NEUROVASC), Pediatric and Primary Lymphedema (PPL), and Vascular Anomalies (VASCA), each producing clinical guidelines, consensus statements, and patient pathways.
• Clinical Decision Support Tools A collection of tools including Clinical Practice Guidelines, Outcome Measures, Do's and Don'ts, Expert Consensus Statements, Patient Pathways, Pregnancy and Family Planning resources, and Psychology and Mental Health resources for healthcare professionals managing rare vascular diseases.
• Training and Education Program Educational offerings including E-Learning modules, Pills of Knowledge, Webinars, EU Trainings, VASCERN Exchange Program, and the VASCERN Summer School under the ERASMUS+ program for healthcare professionals and patient representatives.
• European Patient Registry European registries for rare vascular diseases that systematically collect and store patient data across the EU following FAIR principles, with sub-registries for HHT, HTAD, MSA, NEUROVASC, PPL, and VASCA.
• ERN Collaborative Platform (ECP) A web-based platform operated by the European Commission that facilitates collaboration among all 24 European Reference Networks, enabling virtual networking and knowledge sharing across the ERN system.
• Transversal Working Groups Cross-cutting working groups addressing topics including Communication, Education, Ethics, Pregnancy, Psychology, and Registry development across all six rare disease working groups.

Named customers5 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

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

• JARDIN (Joint Action on Integration of ERNs)coreStrategic or Co-development Partner · 1 February 2024JARDIN project launched February 2024, running until January 2027, co-funded by EU4Health Programme with €18.75 million budget. Brings together all EU Member States, Norway, and Ukraine to embed ERNs into national healthcare systems. Coordinated by Spanish Ministry of Health with over 80 partner institutions.
• Cure HHT (formerly HHT Foundation International)coreStrategic or Co-development PartnerLong-standing collaboration with Cure HHT's Global Research and Medical Advisory Board (GRMAB). Most HHT-WG members and collaborating centers are members of Cure HHT's GRMAB, with Hans-Jurgen Mager serving as GRMAB Vice Chair. Collaboration extends to non-European HHT colleagues.
• European Society of Cardiology (ESC)coreStrategic or Co-development PartnerHTAD-WG members actively collaborate with ESC on clinical guidelines and research. ESC guidelines for cardiovascular disease and pregnancy endorsed by VASCERN.
• European Society of Human Genetics (ESHG)coreStrategic or Co-development PartnerHTAD-WG members collaborate with ESHG on genetic aspects of heritable thoracic aortic diseases.
• The Marfan FoundationcoreStrategic or Co-development PartnerCollaboration with US-based Marfan Foundation for research and patient advocacy on Marfan syndrome and related conditions.
• Montalcino Aortic ConsortiumcoreStrategic or Co-development PartnerInternational consortium focused on aortic diseases collaboration.
• GenTAC AlliancecoreStrategic or Co-development PartnerAlliance focused on genetic variants in aortic diseases.
• The Ehlers-Danlos SocietycoreStrategic or Co-development PartnerMSA-WG collaborates with the Ehlers-Danlos Society on Vascular Ehlers-Danlos Syndrome.
• International Society for the Study of Vascular Anomalies (ISSVA)coreStrategic or Co-development PartnerVASCA-WG members are active participants in ISSVA including its scientific committee and board. VASCA-WG has contributed to identifying genes involved in vascular anomalies and research on targeted therapies.
• EURORDIScoreStrategic or Co-development PartnerVASCERN's ePAG is one of 24 ePAGs supported by EURORDIS and linked to the 24 European Reference Networks on rare diseases.
• ERDERA (European Rare Disease Research Alliance)coreStrategic or Co-development PartnerEuropean Joint Programme on Rare Diseases supporting research on rare vascular diseases.
• IBMmajorTechnology or IntegrationCollaborated with DG SANTE and ERNs to develop CPMS 2.0 platform.
• FAVA-MultiminorStrategic or Co-development PartnerPatient organization partner.
• ERECAminorStrategic or Co-development PartnerRare disease network partner.
• Hospices Civils de Lyon (HCL)minorStrategic or Co-development PartnerFrench hospital system partner.

Scale indicators6 records

Recent moves7 records

Expansion highlights7 records

Emerging players

• Orphanet: INSERM-hosted reference portal for rare diseases and orphan drugs, providing disease classifications, expert center directories, and prevalence data used by ERNs including VASCERN. Operates as a complementary knowledge infrastructure rather than a clinical network.
• EURORDIS (Rare Diseases Europe): European non-profit alliance of rare disease patient organizations that supports all 24 ePAGs linked to ERNs including VASCERN. Directly comparable as a rare disease non-profit ecosystem player with policy advocacy and pan-European reach.

Others

• European Society of Cardiology (ESC): Major European medical society that co-develops guidelines with VASCERN's HTAD-WG on cardiovascular disease and pregnancy. Comparable as a healthcare professional membership organization that publishes clinical guidance for the cardiovascular community VASCERN serves.

Regional players

• RDCRN (Rare Diseases Clinical Research Network): NIH-funded US network of rare disease clinical research consortia. Comparable in mission (rare disease research coordination) and structure (multi-site consortia with patient advocacy), but serves US geography and is grant-funded through NCATS rather than the EU Commission.
• NORD (National Organization for Rare Disorders): US-based rare disease umbrella organization providing patient advocacy, policy work, and research support. Comparable to EURORDIS in role and is a peer through its partnership with VASCERN-aligned organizations like the Marfan Foundation.

Direct peers

• Endo-ERN (European Reference Network for Rare Endocrine Conditions): Sister ERN covering rare endocrine conditions under the same European Commission framework. Comparable in structure, funding model, and patient advocacy integration via ePAG.
• ERDERA (European Rare Disease Research Alliance): European Joint Programme on Rare Diseases that partners with VASCERN for research. Operates as a coordinating funder for rare disease research across Europe and is directly comparable in cross-border research coordination mission.
• Euro-NMD (European Reference Network for Rare Neuromuscular Diseases): One of the 24 ERNs focused on rare neuromuscular diseases. Shares the same ERN governance structure, EU4Health funding model, and CPMS infrastructure as VASCERN, with potential patient overlap in neurovascular phenotypes.
• ERN-EYE (European Reference Network for Rare Eye Diseases): Sister ERN under the same EC framework. Operates with parallel structure including working groups, ePAG patient representation, and CPMS-based cross-border case management, providing direct comparison on rare disease network operations.
• ERN-RND (European Reference Network for Rare Neurological Diseases): One of the 24 European Reference Networks, ERN-RND covers rare neurological diseases and overlaps with VASCERN's NEUROVASC-WG (CADASIL, Moyamoya). Both operate under the same DG SANTE framework and use the CPMS platform for cross-border case discussions.

Market position

Strengths1 record

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/vascern
• Facebookfacebook.com/vascern.eu
• LinkedInlinkedin.com/company/vascern

Revenue estimate

Valuation estimate

Number of profiles

Profiles15 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Vascern