Institut Jérôme Lejeune

What Institut Jérôme Lejeune does

Institut Jérôme Lejeune is a Paris-based non-profit medical, research, and training center founded in 1997 that specializes in trisomy 21 (Down syndrome) and other genetic intellectual disabilities. Operating as a Groupement de Coopération Sanitaire (GCS) with Groupe Hospitalier Paris Saint-Joseph, the institute serves approximately 5,000 children and adult patients through lifelong, multidisciplinary consultations across more than 12 specialties, including pediatrics, neurology, psychiatry, and geriatrics. The institute is labellised as a Centre de Maladie Rare by the French Ministry of Health, embedding it in the national rare disease infrastructure and obligating data contribution to the Banque Nationale des Données Maladies Rares (BNDMR).

The institute's core technology assets are the Entrepôt de Données de Santé (EDS), a centralized health data warehouse aggregating 20 years of clinical and administrative data from Paris, Nantes, and affiliated international foundations (Spain, Argentina), and the Centre de Ressources Biologiques BioJeL, the only biological resource centre in the world dedicated to genetic intellectual disabilities. These assets support 100+ active research programs including RESPIRE 21, Horizon 21, Trial 21, GO-DS21, and COLIBRI, conducted in partnership with European consortia and international research centers. The t21 learning platform and Kit21 health record companion extend the institute's reach into digital training and pediatric care coordination.

Revenue is generated through French public healthcare system reimbursements (Sécurité sociale and supplemental insurance) for medical consultations, paid professional training programs (e.g., 150€ per professional session, 50€ per family session), research grants, and donations. The institute reaches patients via physician referrals, direct appointment requests, and research participation, and distributes research data and biological samples to academic and industry partners worldwide under ethical oversight. Distribution is primarily direct, with in-person consultations at Paris and Nantes sites, supplemented by teleconsultations and distance learning.

Name

Institut Jérôme Lejeune

Legal name

Institut Jérôme Lejeune

Website

https://institutlejeune.org

Company type

Private

Founded year

1997

Operating status

Operating

Headcount range

11–50 employees

Short description

Paris-based non-profit medical, research, and training center specializing in trisomy 21 and genetic intellectual disabilities, serving ~5,000 patients with multidisciplinary lifelong care. Operates the world's only BioJeL biological resource center and a 20-year health data warehouse for this population.

Ownership category

akta.pro rank

Product category

Specialized Genetic Disease Healthcare Services

NAICS

Medical and Diagnostic Laboratories (6215), Educational Services (611), Educational Support Services (611710)

SIC

Services-Specialty Outpatient Facilities, Nec (8093), Services-Health Services (8000)

akta.pro primary industry

Neurogenetics & Rare Neurologic Diseases (HLAKAIAO)

akta.pro secondary industries

Neurorehabilitation Centers (HLAFAFAH), Healthcare Clinical Professions (CME/CE for Nurses, Allied Health, Pharmacy) (EDAAALAC), Investigator & Site Training / GCP Support (HLAGACAF)

Keywords

• Genetic intellectual disability care
• Trisomy 21 research
• Specialized medical consultations
• Clinical research center
• Rare disease healthcare

Headquarters

HQ city

Paris

HQ country

France

HQ region

Europe

Offices4 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Medical Consultation and Care Services: The institute provides specialized outpatient medical consultations across multiple specialties (pediatrics, neurology, psychiatry, geriatrics, etc.) for patients with genetic intellectual disabilities. Revenue is generated through the French public healthcare system (Sécurité sociale) and supplemental insurance (mutuelles) billing.
2. Professional Training Programs: The institute delivers continuing education and training sessions for healthcare professionals and families in the disability sector. Training sessions are priced (e.g., 150€ for professionals, 50€ for families at the January 2026 colloquium) and may be eligible for professional development funding (OPCO).

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

Institut Jérôme Lejeune is a non-profit medical, research, and training center specializing in the care of patients with trisomy 21 (Down syndrome) and other rare genetic intellectual disabilities. The institute operates under a Groupement de Coopération Sanitaire (GCS) with Groupe Hospitalier Paris Saint-Joseph, delivering specialized medical consultations, conducting clinical and translational research, and providing professional training programs for healthcare practitioners. It serves approximately 5,000 patients annually through multidisciplinary care pathways combining genetics, neurology, psychiatry, and pediatrics.

Product overview

Institut Jérôme Lejeune operates as a specialized medical institute organized around three core missions: care (medical consultations with multidisciplinary teams providing lifelong follow-up), research (clinical research programs including RESPIRE 21, Horizon 21, Trial 21, GO-DS21, COLIBRI), and training (professional development for healthcare workers and families). The institute offers specialized products including Kit21 (health tracking companion), a pediatric monitoring guide, the CRB BioJeL biological resource center, and an Entrepôt de Données de Santé health data warehouse. The t21 learning platform provides online educational resources. Founded as the premier European center for Trisomy 21 and genetic intellectual disabilities, the institute is based in Paris and is affiliated with Groupe Hospitalier Paris Saint-Joseph.

Differentiator

Problem solved

Functional benefit

Brands

• t21 learning: Online toolbox providing resources and training materials for families and professionals about Trisomy 21
• CRB BioJeL
• EDS IJL
• Fondations Jérôme Lejeune

Products and services

• Specialized Medical Consultations Multidisciplinary medical consultations for patients with trisomy 21 and other genetic intellectual disabilities, including genetics, neurology, psychiatry, and pediatric specialties. Delivered through a GCS partnership with Groupe Hospitalier Paris Saint-Joseph.
• CRB BioJeL (Biological Resource Center) Biological resource center that collects, stores, and provides biological samples (DNA, cells, tissues) from patients with trisomy 21 to support research programs nationally and internationally.
• Kit21
• Guide de Suivi Pédiatrique (Pediatric Monitoring Guide) A clinical reference guide supporting the pediatric monitoring of children with trisomy 21, providing structured follow-up protocols for healthcare professionals and families.
• Professional Training Programs (Former) Continuing education and training programs for healthcare professionals (doctors, nurses, caregivers) on the medical care, genetic counseling, and therapeutic approaches for trisomy 21 and related intellectual disabilities.
• EDS - Epidemiological Data Service Epidemiological data service that collects, analyzes, and publishes data on the natural history, comorbidities, and outcomes of patients with trisomy 21 to inform research and clinical practice.
• t21 Learning (E-learning Platform) Online e-learning platform delivering continuing medical education modules on the diagnosis, care, and management of trisomy 21 for healthcare professionals.
• Clinical and Translational Research Programs Clinical and translational research programs investigating the pathophysiology, therapeutic targets, and treatment options for trisomy 21 and related genetic intellectual disabilities, conducted in collaboration with academic and industrial partners.
• Portails de Transparence (Transparency Portals) Public-facing transparency portals disclosing the institute's research partnerships, funding sources, conflicts of interest, and collaborations with pharmaceutical and biotechnology companies.

Quantifiable outcome

• Life expectancy for people with trisomy 21 has increased from ~10 years in 1950 to 65 years today, partly due to improved care protocols advanced by research at the institute.
• +1 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Eleven partnerships are on record, tiered core and major.

• CREAI Ile-de-FrancecoreStrategic or Co-development Partner · 27 January 2026Co-organizer of the January 2026 colloquium 'Penser ensemble trouble du développement intellectuel et maladie d'Alzheimer' alongside Institut Jérôme Lejeune, Trisomie 21 France, and Casip-Cojasor. CREAI (Centre Régional d'Études, d'Actions et d'Informations) is a regional body supporting innovation in health and social sectors in Île-de-France.
• Trisomie 21 FrancecoreStrategic or Co-development Partner · 27 January 2026Co-organizer of the January 2026 colloquium on intellectual disability and Alzheimer's disease. Trisomie 21 France is the national federation of trisomy 21 associations, representing families and advocating for the rights of people with trisomy 21.
• Casip-Cojasor (Fondation CASIP)coreStrategic or Co-development Partner · 27 January 2026Co-organizer of the January 2026 colloquium on intellectual disability and Alzheimer's disease. Casip-Cojasor is a foundation supporting people with disabilities and vulnerable populations in France.
• t21 LearningcoreOthersOnline educational toolbox developed and hosted by the institute, providing practical resources, guidance, and training materials for families and professionals caring for people with trisomy 21. Accessible at t21learning.institutlejeune.org.
• DéfiSciencecoreStrategic or Co-development PartnerNational knowledge network (filière de santé) for rare developmental diseases and intellectual disabilities in France. The institute collaborates with DéfiScience, notably on the development of Kit21, the pediatric follow-up guide for children with trisomy 21.
• CRB BioJeLcoreTechnology or IntegrationCentre de Ressources Biologiques BioJeL is the institute's biological resource centre, the only one in the world dedicated to genetic intellectual disability patients. It collects, processes, stores, and distributes biological samples (tissues, DNA) linked to clinical data for research purposes. Accessible at crb-institutlejeune.com.
• Groupe Hospitalier Paris Saint-JosephcoreStrategic or Co-development PartnerThe institute is attached to Groupe Hospitalier Paris Saint-Joseph via a Groupement de Coopération Sanitaire (GCS). The hospital group provides data hosting, IT infrastructure, billing support, and administrative services. Both entities may act as joint data controllers for certain processing purposes.
• Assistance Publique – Hôpitaux de Paris (AP-HP)majorStrategic or Co-development PartnerAP-HP serves as the responsible controller for the national Health Data Warehouse for Rare Diseases (BNDMR – Banque Nationale des Données Maladies Rares), to which the institute contributes patient data as a labeled Centre de Maladie Rare.
• GO-DS21 (European Research Consortium)majorStrategic or Co-development PartnerEuropean research project on genetic determinants of obesity in Down syndrome. The institute participates as a clinical partner, contributing patient data and samples from the EDS and BioJeL to this multinational research initiative.
• Horizon 21 ConsortiummajorStrategic or Co-development PartnerInternational consortium of research centres (including Hospital Sant Pau Barcelona, DZNE Munich) studying cognitive changes and Alzheimer's disease biomarkers in adults with trisomy 21. Multiple sub-projects including Camcog, mCRT, epilepsy, and MRI studies.
• Jérôme Lejeune Foundations (Spain and Argentina)majorStrategic or Co-development PartnerAffiliated international foundations sharing clinical data and biological samples with the institute's EDS and BioJeL. Their data contributes to the institute's Health Data Warehouse and biological resource centre, enabling larger-scale international research.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• LuMind IDSC Foundation: US-based research foundation funding Down syndrome cognition research and clinical trials. Comparable to IJL's research arm but with a narrower translational focus and primarily a grant-making rather than direct-care model.

Direct peers

• Adult Down Syndrome Center (Advocate Health): Chicago-based specialized outpatient center providing lifelong multidisciplinary care for adults with Down syndrome. Operates a similar model of multi-specialty consultations (psychiatry, neurology, geriatrics) integrated with research, and is widely regarded as the leading US counterpart to Institut Lejeune's adult-care model.
• Kennedy Krieger Institute Down Syndrome Clinic: Baltimore-based institute providing specialty medical care, research, and professional training for individuals with Down syndrome and other intellectual disabilities. Similar three-pillar model (care, research, training) and lifecycle care approach.
• Fondation Jérôme Lejeune (Belgium): Sister organization sharing the Jérôme Lejeune mission and historical roots with the Paris-based institute. Funds trisomy 21 research across Europe and operates a clinic in Brussels with overlapping patient population and research collaborations. Most directly comparable peer given shared heritage, mission, and research focus.
• Sie Center for Down Syndrome (Children's Hospital Colorado): Specialized pediatric trisomy 21 program combining multidisciplinary clinical care with translational research and family support services. Comparable in structure to the pediatric arm of Institut Lejeune's operations.
• Massachusetts General Hospital Down Syndrome Program: Academic medical center program delivering lifespan clinical care and translational research for trisomy 21. Operates a similar model of integrated consultations plus research into Alzheimer's biomarkers and comorbidities, with a comparable patient base of ~5,000 individuals.

Regional players

• DépiScience Filière de Santé Maladies Rares: French national rare disease network focused on developmental and intellectual disabilities, of which Institut Lejeune is a partner member. Coordinates rare-disease care pathways across France and co-developed Kit21 with IJL, representing an institutional peer in the same national ecosystem.
• Fondation Jérôme Lejeune Argentina: Buenos Aires-based sister foundation contributing patient data to IJL's Health Data Warehouse. Operates similar trisomy 21 care and research activities in Argentina and represents the institute's primary Latin American extension.
• Trisomie 21 France: National federation of trisomy 21 associations in France representing families and patients. Co-organizes IJL's colloquia and shares patient population; complements IJL's clinical mission with advocacy and social support services.

Broad incumbents

• DZNE (German Center for Neurodegenerative Diseases): Major German research institution studying Alzheimer's and neurodegeneration. Direct partner in the Horizon 21 Consortium studying cognitive changes in adults with trisomy 21; comparable research focus on Alzheimer's biomarkers but at much greater scale and broader scope.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/institutlejeune
• LinkedInlinkedin.com/company/institut-j%C3%A9r%C3%B4me-lejeune

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Institut Jérôme Lejeune