RARE-X
RARE-X is a 501(c)(3) nonprofit (and research program of Global Genes) that operates a federated, Broad Institute-derived data collection and sharing platform serving rare disease patient communities, academic researchers, and biopharma sponsors, funded by grants and corporate sponsorships rather than user fees.
- Company typePrivate
- Founded2020
- HeadquartersAliso Viejo, United States
- Headcount1–10
- GTM typeB2B and B2C
- OfferingSoftware
What RARE-X does
RARE-X is a 501(c)(3) rare disease technology nonprofit that operates a federated, cloud-native Data Collection Platform purpose-built to let patient communities gather, structure, govern, and share de-identified health data with qualified researchers, clinicians, and drug developers. The core product is the RARE-X Data Platform, comprising a Data Collection Program (validated surveys including a Health & Development Survey and Level 2 instruments, genetic report uploads, EHR data) layered onto a federated analysis infrastructure originally developed at the Broad Institute of MIT and Harvard for projects such as Count Me In. Built on this platform are several programs: the Research Readiness Program (clinical trial readiness assessments), the Diversity, Equity, and Inclusion Program (DEIP), Xcelerate RARE (an Open Science Data Challenge hosted on Synapse focused on rare pediatric neurodevelopmental diseases), and the CNVs Commission. Patients retain control of consent and participate in data access governance.
The organization serves three distinct user constituencies: patient communities and caregivers (free access to data collection and registry tools), academic and biotech researchers (data access via federated analysis or Xcelerate RARE challenges), and biopharma industry partners (sponsorship, Corporate Advisory Council membership, and trial-readiness services). Patient-controlled consent and an open-science framing differentiate RARE-X from for-profit registry vendors. Since February 2023, RARE-X has operated as a research program of Global Genes following the completion of a merger.
RARE-X's business model is a nonprofit, grant- and sponsorship-funded model rather than a fee-for-service SaaS model. The platform is offered at no cost to patient communities; revenue derives from biopharma grants and corporate commitments (Genentech, Travere Therapeutics, Roche, Datavant, Horizon, RTW Charitable Foundation) directed at named programs (DEIP, Xcelerate RARE, data standards development). Go-to-market is community-led and channel-partner driven, executed through patient advocacy organizations, the Corporate Advisory Council, events (Exchange Forum, summits), webinars, podcasts (RARE-Xtra), and the Xcelerate RARE challenge mechanism. Specific grant amounts are not disclosed, and the organization operates with 1–10 employees.
RARE-X firmographics
Firmographics- Name
- RARE-X
- Legal name
- RARE-X
- Website
- https://rare-x.org
- Company type
- Private
- Founded year
- 2020
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- RARE-X is a 501(c)(3) nonprofit (and research program of Global Genes) that operates a federated, Broad Institute-derived data collection and sharing platform serving rare disease patient communities, academic researchers, and biopharma sponsors, funded by grants and corporate sponsorships rather than user fees.
- Ownership category
- akta.pro rank
RARE-X industry classification
Industry- Product category
- Rare Disease Data Platform
- NAICS
- Web Search Portals and All Other Information Services (519290), Other Computer Related Services (541519)
- SIC
- Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)
- akta.pro primary industry
- Disease Registries (Cancer, Immunization, Rare Disease, etc.) (HLAJAJAE)
- akta.pro secondary industry
- Multi-Omics Precision Medicine Platforms (genomics/proteomics/metabolomics) (HLAAANAF)
Keywords
Where RARE-X is headquartered
LocationHeadquarters
- HQ city
- Aliso Viejo
- HQ country
- United States
- HQ region
- North America
Markets served
RARE-X business model
Business model- GTM type
- B2B and B2C
- Offering type
- Software
- Cost components
- Personnel, Technology or R&D, Operations, Marketing or Sales, Others
Revenue model
- Grants from biopharma partners: RARE-X is a 501(c)(3) nonprofit that funds programs via grant support from biopharmaceutical companies. Genentech and Travere Therapeutics provided grant support to launch the Diversity, Equity, and Inclusion Program in January 2021.
- Corporate sponsorship and funding commitments: RARE-X secures funding commitments from biopharma partners (e.g., Travere Therapeutics' February 2021 funding commitment) to support patient community data collection, data standards development, and platform enhancements.
- Open Science Data Challenge sponsorship: Xcelerate RARE is sponsored by named partners including Datavant, Horizon, Roche, and RTWCF, providing program funding for the open science challenge.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | — | Free Data Collection Platform access for patient communities and patients |
Go-to-market motion3 records
RARE-X product offering
Product offeringCore offering
RARE-X provides a federated, cloud-native Data Collection Platform (built with the Broad Institute of MIT and Harvard) that lets rare disease patient communities capture, structure, govern, and share de-identified health data — including validated patient-reported surveys, genetic reports, EHR records, imaging, and wearable data — with qualified global researchers, clinicians, and drug developers. Surrounding the platform are programs such as Xcelerate RARE (open science data challenge), the Research Readiness Program (clinical trial readiness assessment), and the Diversity, Equity, and Inclusion Program, all operated as a research program of Global Genes.
Product overview
RARE-X is a 501(c)(3) rare disease technology nonprofit and research program of Global Genes that operates a single unified platform-plus-programs offering built around the RARE-X Data Platform. The RARE-X Data Platform is the core product, comprising the Data Collection Program (DCP) for structured patient-reported and clinical data ingestion (including genetic reports and validated surveys) and the federated data analysis platform (developed with the Broad Institute) for governance, consent, and data sharing. Built on top of this platform are a portfolio of programs and initiatives, including Xcelerate RARE (an Open Science Data Challenge for AI-driven analysis of rare neurodevelopmental disease data), the Research Readiness Program (clinical trial readiness assessment and data collection mobilization), the Diversity, Equity, and Inclusion Program (DEIP), the RARE-Xtra podcast, the Xplore news and insights hub, and specialized rare disease community initiatives such as the CNVs Commission. Together these offerings form RARE-X's effort to build the largest collaborative, patient-driven, open-data access project for rare diseases globally.
Differentiator
Problem solved
Functional benefit
Brands
- Xcelerate RARE: A Rare Disease Open Science Data Challenge bringing together researchers and data scientists in a collaborative and competitive environment to make the best use of patient-provided data to solve big unknowns in healthcare.
- RARE-X Research Readiness Program
Products and services
- RARE-X Data Platform A collaborative, federated data sharing and analysis platform (originally developed at the Broad Institute of MIT and Harvard) that enables rare disease patient communities to gather, structure, govern, and securely share de-identified health data with global researchers, clinicians, and drug developers. Combines a Data Collection Program with a federated data analysis platform and patient-controlled consent.
- Xcelerate RARE Open Science Data Challenge A Rare Disease Open Science Data Challenge that brings together academic and biopharmaceutical researchers and data scientists to analyze patient-provided data from the RARE-X Data Platform in a pre-competitive environment, with anticipated outcomes including shortening the diagnostic odyssey through predicted diagnosis and identifying previously unrecognized disease symptoms.
- Research Readiness Program A program that helps rare disease patient communities systematically assess their clinical trial readiness, identify research gaps, galvanize data collection on the RARE-X Data Collection Platform, and prioritize investments by connecting patient advocacy groups with key researchers and mentors from RARE-X's Corporate Alliance Council.
- Diversity, Equity, and Inclusion Program (DEIP) A program designed to ensure the RARE-X data platform is demographically representative of the rare disease community by engaging underrepresented populations through community-based participatory research, with a DEI Advisory Council, scoping study led by Teneasha Washington, and a published strategic recommendations report.
Companies that use RARE-X
Customer profileIdeal customer profiles3 records
RARE-X technology and API
TechnologyTechnology focussed Yes
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration1 record
AI capability5 records
Feature6 records
RARE-X partnerships and signals
Strategic signalRecent moves6 records
Expansion highlights5 records
RARE-X competitors and assessment
Company assessmentBroad incumbents
- Genetic Alliance: Long-standing patient advocacy umbrella running registry and data-sharing initiatives across many disease areas; offers overlapping capability with RARE-X but operates as a broader advocacy organization rather than a specialized rare disease data platform.
- NORD (National Organization for Rare Disorders): US rare disease advocacy organization operating the IAMRARE patient registry platform and other data programs; competes for the same patient communities and biopharma partnerships while serving a wider advocacy mandate.
Direct peers
- NIH RDCA-DAP (Rare Disease Cures Accelerator-Data and Analytics Platform): NCATS-led federally funded platform aggregating rare disease data for drug developers; competes for the same researcher and biopharma data-access dollars as RARE-X and offers strong credibility with NIH.
- Sage Bionetworks (Synapse): Operates the Synapse open data sharing platform that RARE-X uses to host Xcelerate RARE challenge data; shares RARE-X's federated, open-science approach to biomedical research data.
- PatientsLikeMe: Patient-driven health data sharing platform historically focused on outcome reporting across conditions; a comparable patient-controlled data model for research use, including rare disease communities.
- CoRDS (Coordination of Rare Diseases at Sanford): Sanford Health's rare disease patient registry and natural history platform; a direct competitor for patient community onboarding and biopharma-sponsored registry use, and a listed RARE-X collaboration partner.
Others
- Datavant: Health data connectivity and de-identification company sponsoring Xcelerate RARE; an ecosystem enabler that sits adjacent to RARE-X's platform by linking disparate clinical and research datasets.
Emerging players
- Ciitizen: Health data infrastructure platform that converts patient medical records into computable, research-ready datasets; a RARE-X integration partner with overlapping capability in rare disease data structuring and patient record digitization.
- Invitae: Genetic testing company with a rare disease franchise that aggregates patient-level genetic and clinical data; comparable in rare disease data ambition but commercial and testing-led rather than registry-led.
Regional players
- EURORDIS (Rare Diseases Europe): European rare disease umbrella organization with rare disease registries and data initiatives; comparable in mission and data-sharing orientation but focused on the European regulatory and patient landscape.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks5 records
Key highlights6 records
Customer concentration
RARE-X social profiles
Digital presenceRARE-X financial estimates
Financial estimateRevenue estimate
Valuation estimate
RARE-X leadership team
Management profileNumber of profiles
Profiles7 records
RARE-X funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
RARE-X M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about RARE-X
What does RARE-X do?
RARE-X provides a federated, cloud-native Data Collection Platform (built with the Broad Institute of MIT and Harvard) that lets rare disease patient communities capture, structure, govern, and share de-identified health data — including validated patient-reported surveys, genetic reports, EHR records, imaging, and wearable data — with qualified global researchers, clinicians, and drug developers. Surrounding the platform are programs such as Xcelerate RARE (open science data challenge), the Research Readiness Program (clinical trial readiness assessment), and the Diversity, Equity, and Inclusion Program, all operated as a research program of Global Genes.
Is RARE-X a public or private company?
RARE-X is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was RARE-X founded?
RARE-X was founded in 2020. It employs 1 to 10 people.
Where is RARE-X based?
RARE-X is headquartered in Aliso Viejo, United States, in the North America region.
How does RARE-X make money?
Three revenue lines are on record. Grants from biopharma partners are the primary driver. The others are corporate sponsorship and funding commitments and open Science Data Challenge sponsorship.
Who are RARE-X's main competitors?
Broad incumbents on record are Genetic Alliance and NORD (National Organization for Rare Disorders). Direct peers are NIH RDCA-DAP (Rare Disease Cures Accelerator-Data and Analytics Platform), Sage Bionetworks (Synapse), PatientsLikeMe and CoRDS (Coordination of Rare Diseases at Sanford). Datavant is listed as an others. Emerging players are Ciitizen and Invitae. EURORDIS (Rare Diseases Europe) is listed as a regional player.
Does RARE-X have an API?
No public API is recorded for RARE-X.
What industry is RARE-X in?
RARE-X's product category is Rare Disease Data Platform. Its primary akta.pro industry code is HLAJAJAE, Disease Registries (Cancer, Immunization, Rare Disease, etc.), with a secondary code of HLAAANAF, Multi-Omics Precision Medicine Platforms (genomics/proteomics/metabolomics). Its NAICS code is 519290 and its SIC code is 8090.