What ERN ReCONNET does

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases, established in 2017 and coordinated from Pisa, Italy. It operates as a virtual pan-European infrastructure connecting 63 healthcare providers across 23 EU member states, covering 10 rare disease areas: Antiphospholipid Syndrome (APS), Ehlers-Danlos Syndromes (EDS), Idiopathic Inflammatory Myopathies (IIM), IgG4-related disease, Mixed Connective Tissue Disease (MCTD), Relapsing Polychondritis (RP), Sjögren's disease, Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), and Undifferentiated Connective Tissue Disease (UCTD). The network is approved by the ERN Board of Member States and co-funded by the European Commission under the EU health framework, with the current grant cycle running 2023-2027.

The network's core products include CPMS 2.0 (Clinical Patient Management System) for cross-border virtual consultations between healthcare providers; the TogethERN ReCONNET Registry for standardized patient data collection; accredited e-learning courses and webinars; Clinical Practice Guidelines and decision-support tools; the Exchange Programme for healthcare professional collaboration; and AI-powered patient tools including LupusGPT (beta) and EasyLupus for SLE. Disease-Specific Working Groups coordinate research, education, and clinical activities within each disease area, while ePAG (European Patient Advocacy Group) Advocates are formally embedded in governance.

ERN ReCONNET does not generate commercial revenue. It is a publicly funded EU health infrastructure with services provided to healthcare providers and patients at no cost. The coordination team operates from Azienda Ospedaliero Universitaria Pisana under Network Coordinator Prof. Marta Mosca, with a lean central staff of approximately 8 employees. Distribution occurs through member healthcare institutions, the CPMS platform, e-learning modules, and educational events, while strategic partnerships include EURORDIS, EULAR, ACR, SIR, and the EU-funded JARDIN Joint Action.

Name

ERN ReCONNET

Legal name

European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET)

Website

https://reconnet.ern-net.eu

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

ERN ReCONNET is the EU-funded European Reference Network connecting 63 healthcare providers across 23 countries to improve diagnosis, treatment, and research for rare connective tissue and musculoskeletal diseases, through virtual consultations, registries, guidelines, and patient advocacy integration.

Ownership category

akta.pro rank

Product category

Rare Disease Healthcare Network

NAICS

Ambulatory Health Care Services (621)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)

akta.pro primary industry

Virtual Specialty Care Platforms (tele-stroke, tele-ICU, tele-derm, tele-cardiology) (HLALABAD)

Keywords

• Rare disease networks
• European Reference Networks
• Connective tissue diseases
• Virtual clinical consultations
• Patient registries

Headquarters

HQ city

Pisa

HQ country

Italy

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. European Commission Funding: ERN ReCONNET is one of 24 European Reference Networks approved by the ERN Board of Member States and funded by the European Union. The networks are co-funded by the European Commission through grant programs.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

ERN ReCONNET is a publicly funded European Reference Network coordinating cross-border specialised care, virtual clinical consultations, patient registries, clinical practice guidelines, and educational programmes for rare and complex connective tissue and musculoskeletal diseases. It connects 63 healthcare providers across 23 European countries covering 10 disease areas (APS, EDS, IIM, IgG4-RD, MCTD, RP, SjD, SLE, SSc, UCTD) and delivers services at no cost through EU co-funding.

Product overview

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases, operating as a multi-stakeholder pan-European infrastructure. The network offers a suite of interconnected products and services centered around: the CPMS 2.0 platform for virtual consultations and cross-border patient management; the TogethERN ReCONNET Registry for standardized patient data collection; accredited e-learning courses and webinars for ongoing education; Clinical Practice Guidelines and Clinical Decision Support Tools; the Exchange Programme for professional collaboration; and AI-powered patient support tools including LupusGPT/EasyLupus. The network covers 10 disease areas (APS, EDS, IIM, IgG4-RD, MCTD, RP, SjD, SLE, SSc, UCTD) through dedicated disease groups, and connects 63 Healthcare Providers across 23 European countries.

Differentiator

Problem solved

Functional benefit

Products and services

• CPMS 2.0 (Clinical Patient Management System) Secure web-based application enabling healthcare providers across the ERN to hold virtual consultations, discuss complex cases, share expertise, and coordinate care for patients with rare or low-prevalence complex diseases across national borders.
• TogethERN ReCONNET Registry European patient registry for rare and complex connective tissue diseases enabling standardised data collection, clinical research, and outcome tracking across the network's member healthcare providers.
• ERN ReCONNET e-Learning Accredited Courses Accredited online courses on rare and complex connective tissue diseases (rCTDs) providing training for healthcare professionals, patients, and other stakeholders in the network.
• ERN ReCONNET Webinars Free educational webinars providing ongoing education for the rCTDs community, featuring expert speakers on disease-specific topics and clinical updates.
• CPGs and Clinical Tools (Clinical Practice Guidelines) Clinical Practice Guidelines and Clinical Decision Support Tools for rare connective tissue diseases, developed through expert consensus to standardise diagnosis and management.
• ERN ReCONNET Exchange Programme Professional exchange programme enhancing knowledge sharing and stimulating collaboration between healthcare professionals within ERNs, strengthening capacities and organisation of the networks.
• LupusGPT / EasyLupus AI-powered patient support tools for Systemic Lupus Erythematosus (SLE) including Consultation Cards and LupusGPT (beta), a spoken conversational AI interface for patient self-management and disease education.
• RarERN Pathways Patient journey mapping and storytelling initiative collecting patient narratives to understand and improve care pathways for rare connective tissue diseases.
• ERN ReCONNET Transition of Care Course Accredited course on Transition of Care in rare and complex connective tissue diseases (rCTDs), addressing the transition from paediatric to adult healthcare services.
• Disease-Specific Groups and Resources Ten disease-specific groups covering APS, EDS, IIM, IgG4-RD, MCTD, RP, SjD, SLE, SSc, and UCTD, each developing disease-specific activities, tools, care pathways, and patient resources.

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

AI capability4 records

Feature4 records

Partnerships

Eight partnerships are on record, tiered core and major.

• European Commission / European UnioncoreStrategic or Co-development Partner · 1 January 2017The European Commission established and funds the European Reference Networks (ERNs), including ERN ReCONNET. The network is approved by the ERN Board of Member States and co-funded by the European Commission. ERNs are concrete European infrastructures for rare and low prevalence diseases.
• EURORDIScoreStrategic or Co-development PartnerEURORDIS (Rare Diseases Europe) is a non-governmental patient-driven alliance of rare disease patient organisations. ERN ReCONNET collaborates with EURORDIS on Summer School programs, patient advocacy training, and joint webinar series including Transition in Healthcare initiatives.
• EULAR (European League Against Rheumatism)majorStrategic or Co-development PartnerEULAR is the European umbrella organisation for rheumatology. ERN ReCONNET participates in EULAR conferences, presents research findings, and collaborated on COVID-19 guidance for patients with rheumatic musculoskeletal diseases.
• ACR (American College of Rheumatology)majorStrategic or Co-development PartnerERN ReCONNET presents at ACR Convergence conferences and maintains active participation in American rheumatology community events.
• JARDIN Joint ActioncoreStrategic or Co-development PartnerJARDIN (Joint Action on Rare Diseases) is a EU-funded joint action that ERN ReCONNET participates in to shape the future of ERNs. The network contributes patient stories and collaborates on initiatives to improve rare disease care across Europe.
• SIR (Società Italiana di Reumatologia)majorStrategic or Co-development PartnerItalian Society of Rheumatology - ERN ReCONNET coordinates from Italy and maintains close collaboration with SIR on conferences, education, and guideline development.
• Healthcare Provider Members (54 Full + 9 Affiliated)coreStrategic or Co-development Partner63 Healthcare Providers across 23 European countries form the core of the network. Each HCP contributes clinical expertise, participates in registries, delivers virtual consultations, and implements network activities at local level.
• ePAG Advocates (European Patient Advocacy Groups)coreStrategic or Co-development PartnerPatient advocates formally integrated into network governance. ERN ReCONNET has established partnership with ePAG Advocates representing all disease areas who actively contribute to all network activities, governance, and decision-making.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Orphanet: Orphanet is the leading European reference portal for rare diseases and orphan drugs, providing disease classification, expert centre directories, and clinical guidelines that directly complement the ERN ReCONNET use case in rare connective tissue diseases.
• Other European Reference Networks (e.g., ERN-LUNG, ERN-EURO-NMD, ERN-RND): The 23 other European Reference Networks operate under the identical EU-mandated, EU-funded model, connecting healthcare providers across member states for cross-border consultation on rare and complex diseases. ERN-LUNG (respiratory) and ERN-EURO-NMD (neuromuscular) are particularly close in structure and governance to ERN ReCONNET.
• EURORDIS (Rare Diseases Europe): EURORDIS is the pan-European patient-driven alliance of rare-disease patient organisations and a strategic partner of ERN ReCONNET; it operates at the same European scale with shared patient-advocacy governance and overlapping stakeholder communities.
• RARE-Bestpractices: RARE-Bestpractices is a European initiative developing methodology and standards for clinical practice guidelines in rare diseases, directly overlapping with ERN ReCONNET's guideline-development and decision-support tool activities.

Broad incumbents

• EULAR (European Alliance of Associations for Rheumatology): EULAR is the pan-European umbrella organisation for rheumatology; ERN ReCONNET participates in EULAR conferences and co-developed COVID-19 guidance, sharing overlapping physician communities and disease-area scope but operating as a broader professional society rather than a referral network.

Emerging players

• ECRIN (European Clinical Research Infrastructure Network): ECRIN is a European public infrastructure supporting multinational clinical trial management; while focused on trials rather than rare-disease consultations, it shares ERN ReCONNET's pan-EU public-infrastructure model and overlapping stakeholder community.

Regional players

• ACR (American College of Rheumatology): ACR is the principal US professional rheumatology organisation; ERN ReCONNET presents at ACR Convergence, reflecting shared disease-area expertise but operating in a non-overlapping geography (US vs. EU).
• NORD (National Organization for Rare Disorders): NORD fulfils a comparable rare-disease coordination and advocacy role in the United States, addressing patient access, research, and policy across multiple rare conditions with a comparable multi-stakeholder model to ERN ReCONNET.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

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• Instagraminstagram.com/ernreconnet
• Xx.com/ern_reconnet

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 ERN ReCONNET