What COMBINEDBrain does

COMBINEDBrain is a 501(c)(3) nonprofit consortium founded in 2019 and headquartered in Brentwood, Tennessee, that operates shared research infrastructure for rare genetic neurological disorders. The organization connects more than 130 rare disorder communities across three primary stakeholder groups—patient advocacy foundations, academic researchers and clinicians, and pharmaceutical and biotechnology industry partners—through structured initiatives including multi-stakeholder roundtables, cross-disease research programs, the annual summit, and the Research Roundtable on Rare Genetic Neurodevelopmental Disorders (RR-RGND).

The consortium's core technical platform comprises a coordinated Biorepository for biospecimen collection and distribution (with regional roadshows and standardized processing protocols), Multi-Omics Discovery Studies covering genomics, transcriptomics, and proteomics, Clinical Data Integration for natural history and biomarker research, and an Outcome Measures Platform consisting of Conceptual Models (DCM), ORTAS, ORCA (Observed Reported Communication Abilities), and a Master Outcome Measures Library. Supporting offerings include an EEG Bank for electroencephalography data, Natural History Studies with PAG Matrix Portals, patient-derived Disease Modeling and Therapeutic Discovery, and the "Rent-A-Brain" service providing contracted scientific officer expertise for FDA interactions, grant applications, and strategic research planning. The organization is led by founder Terry Jo V. Bichell and governed through a Governing Board and four advisory boards (Patient, Scientific, Clinical, Industry).

COMBINEDBrain's revenue model combines membership fees from patient advocacy groups and member organizations on multi-year contracts, project-based professional services through Rent-A-Brain, pay-as-you-go Biorepository sample distribution fees, and event sponsorship (e.g., $5,000+ for Annual Summit visibility and $250 per attendee registration). Pricing is not publicly disclosed and varies by program. As a nonprofit, the organization relies on funders in addition to earned revenue, and does not have a traditional equity ownership structure. The go-to-market motion is community-led, anchored by direct engagement through the membership consortium, in-person events, and an industry advisory board that connects the consortium with pharmaceutical drug development programs.

Name

COMBINEDBrain

Legal name

COMBINEDBrain

Website

https://combinedbrain.org

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

COMBINEDBrain is a 501(c)(3) nonprofit consortium that operates shared research infrastructure—including a Biorepository, multi-omics studies, clinical data integration, and standardized outcome measures—for 130+ rare genetic neurological disorder communities, serving patient advocacy groups, academic researchers, clinicians, and pharmaceutical industry partners.

Ownership category

akta.pro rank

Product category

Rare Disease Research Consortium Services

NAICS

Scientific Research and Development Services (5417), Voluntary Health Organizations (813212), Business Associations (813910)

SIC

Services-Commercial Physical & Biological Research (8731), Services-Membership Organizations (8600)

akta.pro primary industry

Neurogenetics & Rare Neurologic Diseases (HLAKAIAO)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Bioinformatics, Multi-Omics Data Analysis & Interpretation Services (HLAGANAI)

Keywords

• Rare disease research consortium
• Biorepository biobanking services
• Clinical data integration
• Neurological disorder research
• Multi-omics discovery studies

Headquarters

HQ city

Brentwood

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Membership Fees: COMBINEDBrain operates with a membership-based model where patient advocacy groups and organizations join the consortium. The site mentions an 'Apply for Membership' option, suggesting recurring membership fees from member organizations.
2. Rent-A-Brain Professional Services: The 'Rent-A-Brain' program offers scientific officer services and project-based scientific consulting to member patient advocacy groups, including document drafting, grant applications, FDA interactions, and strategic research planning services.
3. Biorepository Sample Distribution Fees: Fees charged for distributing biospecimens from the biorepository to researchers and member organizations.
4. Event Sponsorship: Sponsors contribute $5,000 or more to the Annual Summit to receive complimentary registrations and visibility as event sponsors.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

COMBINEDBrain is a nonprofit consortium that develops and operates shared research infrastructure for rare genetic neurological disorders. Its core offerings include a Biorepository for coordinated biospecimen collection and distribution, Multi-Omics Discovery Studies, Clinical Data Integration, Disease Modeling & Therapeutic Discovery, an Outcome Measures Platform (Conceptual Models, ORTAS, ORCA, Measures Library), an EEG Bank, Natural History Studies, and Brain Trust expert access, delivered through membership subscriptions, fee-based services such as Rent-A-Brain consulting and sample distribution, and event sponsorships.

Product overview

COMBINEDBrain is a nonprofit consortium that operates a platform-plus-services model for rare disease research acceleration. The core infrastructure includes the Biorepository for biospecimen collection/distribution, Clinical Data Integration for standardized data, and the Outcome Measures Platform (comprising DCM, ORTAS, ORCA, and the Measures Library). Supporting services include Multi-Omics Discovery Studies, Disease Modeling & Therapeutic Discovery, Expert Access through the Brain Trust, and Rent-A-Brain consulting services. The consortium also maintains data resources like the EEG Bank and runs structured research programs including Natural History Studies and the RR-RGND Research Roundtable. These offerings work together to connect patient advocacy groups, academic researchers, clinicians, and industry partners across more than 130 rare neurological disorder communities.

Differentiator

Problem solved

Functional benefit

Products and services

• Biorepository Coordinated collection and distribution of biospecimens for rare disease research, supporting patient advocacy groups, researchers, and industry partners through sample collection roadshows, home collection instructions, and standardized specimen processing protocols.
• Multi-Omics Discovery Studies Large-scale molecular profiling including genomics, transcriptomics, and proteomics to support biomarker discovery and therapeutic development for rare neurological disorders.
• Clinical Data Integration Standardized clinical and patient-reported data supporting natural history and biomarker research across multiple rare neurological disorders.
• Brain Trust Expert Access & Research Support Access to vetted scientific and clinical experts across the COMBINEDBrain network to support study design, data interpretation, and translational research for member organizations.
• Disease Modeling & Therapeutic Discovery Patient-derived cellular models used to investigate disease mechanisms and evaluate potential treatments for rare genetic neurodevelopmental disorders.
• Outcome Measures Platform Suite of tools including Conceptual Models (DCM), ORTAS outcome measures, ORCA (Observed Reported Communication Abilities), and a Master Outcome Measures Library for standardized measurement across clinical trials in rare neurodevelopmental disorders.
• Rent-A-Brain Contract scientific expertise services where member organizations can access Brain Trust staff for draft documents, scientific rationale, large projects, and government interactions including FDA presentations and ICD-10 applications.
• EEG Bank Repository of EEG data for research use across rare neurological disorders.
• Natural History Studies Structured natural history study programs including PAG Matrix Portals for patient advocacy groups to track disease progression data.
• RR-RGND Research Roundtable on Rare Genetic Neurodevelopmental Disorders Multi-stakeholder roundtable bringing together researchers, clinicians, patient advocates, and industry to discuss rare genetic neurodevelopmental disorders.

Quantifiable outcome

• Connected 130+ rare neurological disorder communities through shared research infrastructure
• +1 more outcomes

Named customers3 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

Feature7 records

Partnerships

Three partnerships are on record, tiered core and minor.

• IRDiRC (International Rare Diseases Research Consortium)coreStrategic or Co-development Partner · 9 December 2025COMBINEDBrain participates in IRDiRC activities and publications. The 2nd International Conference on Clinical Research Networks for Rare Diseases was jointly developed by ERDERA, Rare Diseases International, and IRDiRC, with COMBINEDBrain involved in dissemination and participation. The conference focused on mobilizing the global rare disease clinical research ecosystem.
• Our Place NashvilleminorGTM or Marketing PartnerOur Place Nashville served as Co-Host for the 2026 COMBINEDBrain Annual Summit, providing venue and logistical support for the event held in Nashville, TN.
• TBCK FoundationminorStrategic or Co-development PartnerThe TBCK Foundation hosts the 'Black Ties for Rare' gala event and collaborates with COMBINEDBrain on community outreach and awareness initiatives in the rare disease space.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest US rare disease patient advocacy umbrella organization providing membership, policy advocacy, and research support across all rare diseases, not just neurological. Directly comparable mission of aggregating patient communities and supporting rare disease research infrastructure.
• Critical Path Institute (C-Path): Independent nonprofit creating consortia with FDA, industry, and academia to develop drug development tools, including clinical outcome assessments and biomarker qualification. Directly comparable in producing standardized outcome measures and data standards used across rare disease trials.

Direct peers

• Rare Diseases Clinical Research Network (RDCRN): NIH-funded network of consortia conducting multi-site clinical research in rare diseases, including several rare neurological disorders. Directly comparable as a multi-stakeholder consortium operating shared research infrastructure and natural history studies for rare diseases.
• Orphan Disease Center (University of Pennsylvania): Academic center focused on developing therapies for rare diseases through pilot grants, natural history studies, and industry partnerships. Comparable in operating shared research programs and bridging academia, PAGs, and pharma for rare disease drug development.
• Global Genes: Nonprofit rare disease advocacy organization building connected communities, providing toolkits, and convening stakeholders across hundreds of rare diseases. Comparable membership/community-led model supporting patient advocacy groups in research readiness.
• EveryLife Foundation for Rare Diseases: US rare disease advocacy nonprofit focused on accelerating biotech innovation through policy, science, and community engagement. Comparable as a nonprofit hub connecting PAGs, researchers, clinicians, and industry for rare disease therapeutic development.

Regional players

• EURORDIS – Rare Diseases Europe: European umbrella organization for rare disease patient organizations, operating the European Rare Diseases Research Alliance and similar multi-stakeholder consortium activities. Comparable consortium model for rare disease research infrastructure, with a European geographic focus.

Emerging players

• Accelerated Cure Project for EAE (now Curable): Nonprofit operating a multi-disease biobank and patient repository for autoimmune and rare neurological disorders. Comparable in running a shared biorepository and clinical data integration platform for rare disease research.
• Rett Syndrome Research Trust: Single-disease patient-driven research foundation operating biorepository, natural history, and outcome measure programs for Rett syndrome — one of the rare neurological disorders within COMBINEDBrain's scope. Comparable as a disease-specific research infrastructure operator.
• Angelman Syndrome Foundation: Patient advocacy foundation funding and operating natural history studies, biorepository, and outcome measures for Angelman syndrome — a rare genetic neurological disorder in COMBINEDBrain's network. Comparable in delivering research infrastructure for an individual rare neurodevelopmental disorder.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 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 COMBINEDBrain