101 Genomes Foundation

What 101 Genomes Foundation does

101 Genomes Foundation is a Belgian private non-profit foundation established on November 10, 2017, by Ludivine Verboogen and Romain Alderweireldt-Verboogen after their son's diagnosis with severe Marfan syndrome. It supports genomic and bioinformatics research to identify protective modifier genes that explain why some patients with pathogenic mutations remain clinically protected, with an initial focus on Marfan syndrome and a planned extension to Loeys-Dietz syndrome through the GELDS study. The foundation's core products include the Genomic Cloud (an Azure-hosted, ISO 27001:2013-certified environment for storing whole-genome-sequenced patient data), the BioB Biobank hosted by CryopAL (ISO 9001:2015 and ISO 20387:2018 certified), the GEMS Consent App for dynamic patient consent and enrollment, and a suite of AI-powered bioinformatics tools — GEMVAP for FBN1 variant classification, ORVAL for oligogenic variant analysis, and VarCoPP for digenic pathogenicity prediction. Operations are built on a four-pillar model of administrative/financial governance (via King Baudouin Foundation), legal/ethical (dynamic consent), biological (lab and biobank), and digital (Genomic Cloud and bioinformatics) infrastructure. The foundation is funded entirely through philanthropic donations routed via the King Baudouin Foundation, research grants (Innoviris, FWO), and crowdfunding, with services provided free to participating patients; 230 genomes have been collected across 18 countries, and in June 2025 the organization became the first genomic Data Altruist Organisation recognized in the European Union under the Data Governance Act.

Name

101 Genomes Foundation

Legal name

Fondation 101 Genomes

Website

https://f101g.org

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

101 Genomes Foundation is a Belgian non-profit that operates a Microsoft Azure-hosted Genomic Cloud and AI bioinformatics tools to identify protective modifier genes for Marfan and Loeys-Dietz syndromes, serving rare-disease patients and academic research groups across 18 countries.

Ownership category

akta.pro rank

Product category

Rare Disease Genomics Research Platform

NAICS

Medical and Diagnostic Laboratories (6215), Medical Laboratories (621511), Research and Development in Biotechnology (except Nanobiotechnology) (541714), Scientific Research and Development Services (5417)

SIC

Services-Medical Laboratories (8071), Services-Commercial Physical & Biological Research (8731), In Vitro & In Vivo Diagnostic Substances (2835)

akta.pro primary industry

Genomics & Next-Generation Sequencing (NGS) Services (HLAGANAA)

akta.pro secondary industries

Genetic & Genomic Testing (germline, somatic, carrier, pharmacogenomics) (HLAAALAD), Molecular Diagnostics & Genomics Laboratories (HLAFAMAE), Laboratory-Based Surveillance & Genomic Epidemiology (WGS/NGS) (HLAJABAC), Molecular & Genetic Testing (PCR/NGS/qPCR) (HLAGADAF), Population Genomics & Preventive Precision Health Programs (HLAAANAL)

Keywords

• Rare disease genomics
• Genomic cloud platform
• Bioinformatics AI tools
• Biobank storage services
• Patient consent applications

Headquarters

HQ city

Brussels

HQ country

Belgium

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Software

Cost components

Technology or R&D, Personnel, Operations, Others

Revenue model

1. Philanthropic Donations: The foundation raises funds through donations from individuals, collected via the King Baudouin Foundation. Donations are tax-deductible in all European countries and many countries outside the EU.
2. Research Grants: Funded by grants from organizations such as Innoviris (Brussels-Capital Region) for Genome4Brussels project and other institutional funding.
3. Crowdfunding: The foundation has conducted crowdfunding campaigns such as the 'impatients!' campaign launched in November 2018.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels6 records

Core offering

101 Genomes Foundation operates a patient-initiated genomic research infrastructure for rare diseases, anchored by a Genomic Cloud hosted on Microsoft Azure that stores whole-genome sequencing data from Marfan and Loeys-Dietz syndrome patients. The foundation provides dynamic consent applications (GEMS App), a biological sample biobank (BioB), and AI-powered bioinformatics tools (GEMVAP, ORVAL, VarCoPP) to enable researchers to identify protective modifier genes rather than only pathogenic variants.

Product overview

101 Genomes Foundation operates as a genomic research infrastructure combining four pillars: a Genomic Cloud for storing whole genome sequencing data, a BioB Biobank for biological samples, dynamic consent management applications (GEMS App, GELDS App), and a partnership with the King Baudouin Foundation. The foundation's core offering includes AI-powered bioinformatics tools (GEMVAP for FBN1 variant classification, ORVAL for oligogenic analysis, VarCoPP for pathogenicity prediction) deployed on its Azure-based Genomic Cloud. The ecosystem also includes Fair Genomics (FairGX), a wholly-owned subsidiary for technology transfer, with applications like GEMVAP Live, Consent App, and Pheno App enabling patient participation and research access.

Differentiator

Problem solved

Functional benefit

Brands

• GEMS: Consent application enabling Marfan syndrome patients to actively participate in research by joining the GEMS study to identify protective modifier genes in cardiovascular disease.
• GEMVAP
• Consent App
• Pheno App
• GEMVAP Live
• GELDS

Products and services

• Genomic Cloud
• BioB Biobank
• GEMS App
• GEMVAP
• GEMVAP Live
• Consent App
• Pheno App
• ORVAL

Quantifiable outcome

• First genomic Data Altruist Organisation recognized in Europe (June 2025)
• +3 more outcomes

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

AI capability8 records

Feature9 records

Partnerships

13 partnerships are on record, tiered core and minor.

• MicrosoftcoreTechnology or Integration · 2 February 2022Collaboration with Microsoft for cloud infrastructure. Genomic Cloud built on Microsoft Azure with ISO 27001:2013 certification and Defender 100% Secure score.
• FairGX (Fair Genomics)coreTechnology or Integration · 1 January 2020Limited liability company 100% owned and controlled by 101 Genomes Foundation. Created to support transfer of technologies and innovations developed through Genome4Brussels to the public. Houses ORVAL and other bioinformatics tools.
• Géraldine Van der AuweraminorStrategic or Co-development Partner · 1 January 2020Advisory consultant and former Broad Institute researcher. Author of 'Genomics in the Cloud' (O'Reilly 2020) and co-director of GA4GH Large-Scale Genomics Workstream. Provides guidance on cloud infrastructure development.
• Genome4Brussels Consortium (IB2, CHG, MLG)coreStrategic or Co-development Partner · 1 January 2019Consortium with Interuniversity Institute of Bioinformatics Brussels (IB2), ULB Center of Human Genetics (CHG), and ULB Machine Learning Group (MLG) for developing bioinformatics tools and AI for rare disease research. Funded by Innoviris.
• UZ Gent and UZAcoreStrategic or Co-development PartnerJoint research partners conducting the GEMS study (search for protective genes in Marfan syndrome) and the GELDS study (Loeys-Dietz syndrome). UZ Gent and UZA laboratories conduct in vivo (zebrafish) and in vitro (iPSC human cells) research.
• CryopAL Biobanque SolutionscoreTechnology or IntegrationBiobank services provider hosting the BioB biobank. Holds ISO 9001:2015 and ISO 20387:2018 certifications. Biobank approved by Erasme Ethics Committee and received notification BB220008 from FAMHP.
• Global Alliance for Genomics and Health (GA4GH)minorStrategic or Co-development PartnerInternational organization developing technical standards and regulatory frameworks for responsible genomic data sharing. 101 Genomes contributes through advisory participation.
• VASCERN (European Reference Network for Rare Vascular Diseases)minorStrategic or Co-development PartnerEuropean Network for Rare Vascular Diseases. Organized seminars about 101 Genomes for ePAG (patient association) representatives in January 2023.
• ABSM (Belgian Marfan Syndrome Association)coreChannel Partner/ Reseller/ DistributorBelgian patient association providing support and promoting participation in GEMS research. Co-sponsored charity events and gala.
• AssoMarfans (French Marfan Syndrome Association)coreChannel Partner/ Reseller/ DistributorFrench patient association. Conducted GEMS webinars and hosted presentations about 101 Genomes research.
• DEN-I (Luxembourg Marfan Syndrome Association)minorChannel Partner/ Reseller/ DistributorLuxembourg patient association organizing annual scientific days and supporting research participation.
• Marfan Europe NetworkcoreChannel Partner/ Reseller/ DistributorEuropean network connecting national Marfan associations. Organized congress and facilitated presentations about 101 Genomes.
• SIMA (Spanish Marfan Association)minorChannel Partner/ Reseller/ DistributorSpanish patient association providing support for research participation and awareness.

Scale indicators5 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• Genomics England: UK government-backed program that built a large-scale genomic data platform with consent infrastructure for rare disease and cancer research. Operates a participant-driven model with a sequenced cohort, similar in architecture to 101 Genomes' GEMS consent and Genomic Cloud stack.
• deCODE genetics (Amgen): Iceland-based genomics company that uses population-scale WGS data to identify rare disease variants and modifier genes. Shares 101 Genomes' focus on uncovering protective genetic factors, though operating commercially at population scale.
• UK Biobank: Large-scale biomedical database with deep genomic and phenotypic data on 500,000 participants, accessible to researchers worldwide. Comparable to 101 Genomes in providing consented genomic/phenotypic data to authorized research groups, but at vastly greater scale.
• FinnGen: Public-private genomic research consortium combining biobank samples with nationwide health records to discover genetic variants associated with disease. Highly comparable as a biobank-plus-cloud model built to identify disease-associated and protective variants at population scale.
• NIH All of Us Research Program: US-led longitudinal cohort building a richly phenotyped genomic database from one million diverse participants. Comparable in combining dynamic consent, WGS, and a researcher-accessible cloud platform for variant discovery across diseases.

Emerging players

• Fabric Genomics: Clinical genomics interpretation platform using AI to classify rare disease variants for clinical labs and hospitals. Comparable to 101 Genomes' GEMVAP and VarCoPP tools in applying machine learning to rare variant pathogenicity prediction.
• Lifebit: Federated genomics and biomedical data platform offering cloud-native analysis infrastructure for population and clinical genomics. Comparable to 101 Genomes' Genomic Cloud vision but oriented to large pharmaceutical and national cohort deployments.
• DNAnexus: Cloud-based genomic data management and analysis platform used by large-scale sequencing programs including All of Us. Overlaps with 101 Genomes' Genomic Cloud architecture and Azure-based deployment model for regulated genomic workloads.

Broad incumbents

• The Marfan Foundation: US non-profit patient advocacy and research-funding organization for Marfan syndrome and related conditions. Direct thematic peer — operates patient conferences, registries, and research grants for the same disease community that 101 Genomes serves in Europe.

Others

• EURORDIS – Rare Diseases Europe: European umbrella organization representing over 1,000 rare disease patient associations and supporting patient-driven research policy including the European Reference Networks (e.g., VASCERN). An ecosystem enabler 101 Genomes engages with through VASCERN ePAG seminars.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/fondation-101-g%C3%A9nomes

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Subsidiaries1 record

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 101 Genomes Foundation