What Global Genes does

Global Genes is a 501(c)(3) nonprofit patient advocacy organization founded in 2008 and headquartered in Washington, DC. The organization operates as an umbrella entity serving the rare disease community, which the firm sizes at approximately 400 million people globally affected by over 10,000 distinct rare and genetic diseases. Its stakeholder base spans four primary segments: rare disease patients and caregivers, patient advocacy nonprofits, biopharmaceutical and biotech companies, and academic researchers and clinicians. The organization partners with Boston Children's Hospital on the biennial RARE Drug Development Symposium and runs the Global Advocacy Alliance of more than 800 patient advocacy organizations across 46 countries.

The organization's core technology asset is RARE-X, a patient-owned data collection platform that enables patient advocacy groups (PAGs) to collect, structure, and share clinical and patient-reported outcome data with researchers, supporting clinical trial feasibility and outcome measure development. Disease-specific research consortia (Sleep for central disorders of hypersomnolence, Pompe, and Vision for rare ocular disorders) are layered onto RARE-X to create clinical-trial-ready populations. Supporting programs include RARE Concierge (free one-on-one patient navigation services), the Global Advocacy Alliance membership program, the Research Acceleration Program in partnership with the University of Notre Dame, the Xcelerate RARE Open Science Data Challenge, and recurring events including the RARE Drug Development Symposium, RARE Advocacy Exchange virtual summit, RAD Brain Workshop, and World Rare Disease Day.

Global Genes does not pursue commercial revenue. Its financial base is built on individual and foundation donations (501(c)(3) tax-deductible contributions), RARE Corporate Alliance membership dues and sponsorships from pharmaceutical and biotech companies, and event-specific sponsorships (e.g., RARE Drug Development Symposium, Virtual Advocacy Exchange, RARE-X, RARE Concierge). Capacity-building funding includes a $1.5 million technology grant from the Chan Zuckerberg Initiative awarded in February 2025 to advance RARE-X. Patient-facing services are provided at no cost, with pricing structured as freemium for end users and membership/sponsorship fees for organizational buyers.

Name

Global Genes

Legal name

Global Genes

Website

https://globalgenes.org

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

11–50 employees

Short description

Global Genes is a 501(c)(3) nonprofit patient advocacy organization that operates the RARE-X rare disease data platform and provides patient navigation, community-building, and research-enablement services to rare disease patients, advocacy organizations, biopharma companies, and academic researchers.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy Services

NAICS

Individual and Family Services (6241), Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Membership Organizations (8600), Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease advocacy
• Patient support services
• Patient data platform
• Nonprofit health organization
• Disease research resources

Headquarters

HQ city

Washington

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: Global Genes operates as a 501(c)(3) nonprofit organization relying upon the support of generous donors to fulfill its mission. The organization accepts donations from individuals, foundations, and organizations to support rare disease community programs and resources.
2. Corporate Alliance Membership and Sponsorship: The RARE Corporate Alliance is a partnership of industry stakeholders committed to improving lives of people with rare diseases. Pharmaceutical and biotech companies join as members and sponsors to support patient education, community building, and access to approved rare disease treatments.
3. Event Sponsorship: Organizations sponsor specific programs and events including the RARE Drug Development Symposium, Virtual Advocacy Exchange, RARE Concierge, Educational Resources, RARE-X Research Program, and Xcelerate RARE Open Science Data Challenge.

Pricing tiers

Go-to-market motion2 records

Distribution channels6 records

Marketing channels10 records

Core offering

Global Genes is a 501(c)(3) non-profit patient advocacy organization that supports the rare disease community through free personalized patient services (RARE Concierge), a patient-owned data collection and sharing platform (RARE-X), and community-building programs such as the Global Advocacy Alliance (860+ member organizations across 46 countries). The organization also delivers educational resources, research acceleration advisory services, disease-specific consortia (Sleep, Pompe, Vision), and major events including the RARE Drug Development Symposium. Its mission centers on equipping rare disease patient advocates with tools, training, and trust to lead research activation.

Product overview

Global Genes operates as an umbrella non-profit patient advocacy organization offering a portfolio of interconnected programs and platforms. The core offering is the RARE-X Data Collection Platform, which enables patient-driven data collection for research. This is supported by direct patient services (RARE Concierge Patient Services), community platforms (RARE Portal, Global Advocacy Alliance with 860+ member organizations), and educational resources (Quick Guide Series, Data DIY training, Resource Hub). Research-focused initiatives include the Research Acceleration Program, Xcelerate RARE Open Science Data Challenge, and three disease-specific consortia (Sleep, Pompe, Vision). The organization also hosts major events including the annual RARE Drug Development Symposium, RARE Advocacy Exchange virtual summit, RAD Brain Workshop, and World Rare Disease Day. The RARE List provides a searchable directory of over 10,000 rare diseases with clinical trial information, while RARE Daily serves as the official content platform for news and articles.

Differentiator

Problem solved

Functional benefit

Brands

• RARE-X: A platform for collecting, structuring and sharing rare disease data in collaboration with patient advocacy groups (PAGs).
• Global Advocacy Alliance
• RARE Concierge
• RARE Daily
• RARE List

Products and services

• RARE-X Data Collection Platform A structured data collection and sharing platform enabling rare disease patients and Patient Advocacy Groups (PAGs) to contribute clinical and patient-reported outcome data that researchers can access to accelerate therapy development.
• RARE Concierge Patient Services Free personalized one-on-one service that connects patients, caregivers, and healthcare providers with rare disease information, resources, specialist referrals, and community connections.
• Global Advocacy Alliance A global members-only community of over 860 non-profit organizations and support groups committed to building awareness, creating support networks, advancing education, and propelling rare disease research across 46 countries.
• RARE List and Clinical Trials Hub Searchable directory of over 10,000 rare diseases with associated resources, information, and clinical trial listings for patients, caregivers, and researchers.
• RARE Portal Online community portal where patients, caregivers, and advocates connect, share experiences, and access exclusive resources and networking opportunities.
• Research Acceleration Program Advisory program in partnership with the University of Notre Dame that assesses the therapeutic landscape for specific diseases and develops roadmap recommendations to accelerate research progress.
• Xcelerate RARE Open Science Data Challenge A collaborative and competitive program where researchers use patient-provided data to address unknowns in rare disease understanding and treatment development.
• RARE Drug Development Symposium 2.5-day educational symposium in partnership with Boston Children's Hospital offering practical insights into research strategies and activities for advocates initiating or refining rare disease research.
• RARE Advocacy Exchange A year-long virtual patient summit providing ongoing education, networking, and advocacy development for rare disease community leaders.
• RAD Brain Workshop A 3-day RARE Advocate Development educational workshop focused on the development of CNS (central nervous system) therapies for rare disease advocates.
• RARE-X Vision Consortium A research consortium focused on creating clinical trial ready populations in the ocular disease community and identifying meaningful outcome measures for rare eye disorders.
• RARE-X Sleep Consortium A research consortium focused on creating clinical trial ready populations in central disorders of hypersomnolence (CDoH) and identifying meaningful outcome measures.
• RARE-X Pompe Consortium A research consortium focused on removing barriers for data collection and sharing for individuals living with Pompe disease.

Quantifiable outcome

• 800+ patient advocacy organizations connected through Global Advocacy Alliance
• +2 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Six partnerships are on record, tiered core and minor.

• Kiora PharmaceuticalscoreStrategic or Co-development Partner · 30 October 2025Kiora Pharmaceuticals joined Global Genes' RARE-X Vision Consortium, a partnership focused on advancing research for rare ocular disorders. The collaboration aims to improve clinical trial processes, patient identification, and outcome measures, with Kiora contributing its development of therapies for retinal diseases.
• admedicumcoreStrategic or Co-development Partner · 28 October 2025Global Genes and admedicum launched a strategic collaboration to advance patient-driven research, combining expertise in patient advocacy and patient engagement consulting.
• Boston Children's HospitalcoreStrategic or Co-development Partner · 24 June 2025Global Genes and Boston Children's Hospital partner for the annual RARE Drug Development Symposium, bringing together rare disease researchers, patient advocates, and industry stakeholders to accelerate therapy development.
• University of Notre DamecoreStrategic or Co-development Partner · 5 September 2024Global Genes and University of Notre Dame launched the Research Acceleration Program, a collaborative initiative providing advisory services to assess therapeutic landscape and develop roadmap recommendations for rare disease communities.
• Black Women's Health Imperative/Rare Disease Diversity CoalitioncoreStrategic or Co-development PartnerPartnership to address family health history awareness, genetic testing education, and diagnosis support, particularly in communities of color.
• CURE SYNGAP1minorStrategic or Co-development PartnerCURE SYNGAP1 invested $111,960 in RARE-X to accelerate collection of high-quality patient-reported outcome measure data for ProMMIS.

Scale indicators10 records

Recent moves8 records

Expansion highlights6 records

Direct peers

• National Organization for Rare Disorders (NORD): NORD is the largest US umbrella rare disease patient advocacy organization with 300+ member organizations, operating patient registries, advocacy programs, and research initiatives. Directly comparable to Global Genes as both serve as broad umbrella advocates across all rare diseases, not single conditions.
• EveryLife Foundation for Rare Diseases: US-based rare disease advocacy organization focused on policy and legislative engagement to accelerate drug development. Comparable to Global Genes in its focus on the broader rare disease community rather than single diseases, with overlapping biopharma engagement.
• Genetic Alliance: US nonprofit coalition of 10,000+ health organizations serving the genetic disease community. Comparable to Global Genes in operating data platforms, advocacy networks, and serving as an umbrella for genetic and rare conditions.
• Orphanet: European reference portal for rare diseases and orphan drugs, providing comprehensive disease databases and patient resources. Comparable to Global Genes' RARE List and Clinical Trials Hub in serving as a knowledge infrastructure for rare disease communities globally.
• Rare Diseases International: Global alliance of rare disease patient organizations representing 100+ countries. Directly comparable to Global Genes' Global Advocacy Alliance in mission and global coalition-building for rare disease advocacy.

Emerging players

• Rare Genomics Institute: US-based nonprofit that connects rare disease patients with genomics research opportunities. Comparable to Global Genes' RARE-X program in enabling patient access to genomic research and data sharing.
• RARE Science: Nonprofit focused on accelerating rare disease therapeutic development through data and collaborative research. Comparable to Global Genes' RARE-X data platform and Research Acceleration Program in mission and approach to empowering patient communities.

Others

• Global Alliance for Genomics and Health (GA4GH): International policy-framing organization for genomics data sharing standards. Comparable to Global Genes/RARE-X as an enabling infrastructure organization, though focused on broader genomic data standards rather than rare disease-specific services.

Regional players

• EURORDIS - Rare Diseases Europe: European umbrella rare disease advocacy organization representing 1000+ patient organizations across Europe. Comparable to Global Genes in mission and structure, but operating primarily in European geography with a different regulatory focus.

Broad incumbents

• National Institutes of Health - NCATS Rare Diseases: US government body coordinating rare disease research programs including the Rare Diseases Clinical Research Network. Comparable to Global Genes as a major convening entity for rare disease research, though as a government-funded incumbent with vastly larger scale.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/GlobalGenes
• YouTubeyoutube.com/channel/UC3kGR-FsXTEbtGj1Ljg4CxA
• Facebookfacebook.com/globalgenes
• Instagraminstagram.com/globalgenes
• LinkedInlinkedin.com/company/global-genes-rare-project

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Global Genes