National Fragile X Foundation

What National Fragile X Foundation does

The National Fragile X Foundation (NFXF) is a 501(c)(3) nonprofit patient advocacy organization founded in 1984 and headquartered in Washington, D.C. It serves families and individuals affected by Fragile X syndrome (FXS), Fragile X premutation, Fragile X-associated tremor/ataxia syndrome (FXTAS), and Fragile X-associated primary ovarian insufficiency (FXPOI) through four functional pillars: advocacy, education, research facilitation, and treatment support. The foundation estimates a U.S. addressable population of approximately 100,000 individuals with FXS and 1.5 million premutation carriers, many of whom are undiagnosed.

NFXF's core platform assets include the Fragile X Clinical & Research Consortium (FXCRC), a network of more than 30 specialty clinics that grew from 11 founding institutions in 2006; the FORWARD-MARCH natural history study database and registry, supported by a $4 million CDC cooperative agreement awarded in 2021; the International Fragile X Premutation Registry; the Fragile X MasterClass™ online training program; treatment recommendation documents; clinic finders; and an annual International Fragile X Conference, with the 20th edition scheduled for July 2026. Distribution is delivered through the foundation's website, regional community chapters, email newsletters, webinars, awareness campaigns, and advocacy events including the annual Advocacy Day on Capitol Hill. The foundation does not develop proprietary technology products beyond standard web, database, and learning management infrastructure.

The organization operates a community-led, donation-based revenue model, generating income through individual contributions, corporate sponsorships, event fundraisers (FORE! Fragile X golf events, Fishing for a Cure, X Strides walks/runs), and merchandise sales through the NFXF Shop. All core mission services are provided free of charge. Financial results are not publicly disclosed, but the foundation holds Charity Navigator's Four-Star Charity rating and Candid's Platinum Seal of Transparency, indicating recognized governance and accountability standards. NFXF partners with the CDC, DOD PRMRP, NIH-aligned researchers, UC Davis MIND Institute, FRAXA Research Foundation, and pharma sponsors including Shionogi and Harmony Biosciences to advance clinical trials and research dissemination.

Name

National Fragile X Foundation

Legal name

National Fragile X Foundation

Website

https://fragilex.org

Company type

Private

Founded year

1984

Operating status

Operating

Headcount range

1–10 employees

Short description

The National Fragile X Foundation is a 501(c)(3) nonprofit founded in 1984 that serves individuals and families affected by Fragile X syndrome, premutation, FXTAS, and FXPOI through advocacy, education, research facilitation, and treatment support, coordinating a network of 30+ specialty clinics and major research registries.

Ownership category

akta.pro rank

Product category

Patient Advocacy / Rare Disease Nonprofit Services

NAICS

Services for the Elderly and Persons with Disabilities (62412), Services for the Elderly and Persons with Disabilities (624120), Other Individual and Family Services (624190), Social Assistance (624)

SIC

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

akta.pro primary industry

Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Fragile x advocacy
• Patient advocacy services
• Rare disease research
• Genetic disorder support
• Community health education

Headquarters

HQ city

Mc Lean

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Contributions: The primary revenue stream comes from individual donations, corporate sponsorships, and fundraising events. The organization hosts personal fundraisers, golf events (FORE! Fragile X), fishing events (Fishing for a Cure), and other community fundraising activities.
2. NFXF Shop: Online store selling merchandise, educational materials, and resources related to Fragile X awareness and support.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels7 records

Core offering

The National Fragile X Foundation delivers a comprehensive ecosystem of education, advocacy, research facilitation, and community support programs for individuals and families affected by Fragile X syndrome, FXTAS, FXPOI, and Fragile X premutation. Core deliverables include educational resources (Fragile X 101, MasterClass training, webinars, e-books), clinic finder tools, research registries (FORWARD-MARCH, International Premutation Registry), and convening events such as the annual International Fragile X Conference and Advocacy Day.

Product overview

The National Fragile X Foundation operates a comprehensive resource and support platform centered around Fragile X disorders. The core offerings include educational resources (Fragile X 101, MasterClass™ online training, webinars, e-books), clinical resource tools (Syndrome Clinic Finder, FXTAS Clinic Finder, International Clinic Finder), and research programs (FORWARD-MARCH Registry, Data Repository, Research Readiness Program, International Fragile X Premutation Registry). The foundation also provides community connection through advocacy programs, awareness events (Fragile X Awareness Month, X Strides, NFXF International Conference), and a community support network. Treatment recommendations and clinical consensus documents are provided for healthcare professionals. The organization connects affected individuals with specialty clinics and facilitates participation in clinical trials and research studies.

Differentiator

Problem solved

Functional benefit

Brands

• NFXF Shop: Online store for Fragile X merchandise and resources
• Fragile X Clinical & Research Consortium (FXCRC)
• FORWARD-MARCH
• International Fragile X Premutation Registry

Products and services

• Fragile X MasterClass
• NFXF International Fragile X Conference
• FORWARD-MARCH Database and Registry
• International Fragile X Premutation Registry
• NFXF Data Repository
• NFXF Research Readiness Program
• NFXF Shop
• Fragile X Syndrome Clinic Finder
• FXTAS Clinic Finder
• International Clinic Finder
• Treatment Recommendations
• NFXF Advocacy Day

Quantifiable outcome

• Over 30 Fragile X clinics coordinated through FXCRC
• +4 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and strategic.

• ShionogicoreStrategic or Co-development PartnerShionogi is conducting the EXPERIENCE Fragile X clinical trials. The NFXF hosts community Q&A sessions with Shionogi and shares trial updates with the Fragile X community. The partnership includes a caregiver story series sponsored by Shionogi highlighting family experiences during Fragile X Awareness Month.
• FRAXA Research FoundationcoreStrategic or Co-development PartnerFRAXA is a key partner in hosting joint community Q&A sessions about clinical trials, including the Shionogi EXPERIENCE trial updates. Both organizations work together to advance Fragile X research and provide community education.
• Harmony BiosciencesstrategicStrategic or Co-development PartnerHarmony Biosciences has partnered with NFXF through the RECONNECT trial and participated in Advocacy Day events. The company focuses on rare neurological diseases and shares NFXF's commitment to the Fragile X community.
• LivJoy FoundationstrategicStrategic or Co-development PartnerThe LivJoy Foundation partnered with NFXF to present the Females with Fragile X Syndrome Webinar Series in 2026, expanding support and resources for females affected by Fragile X.
• UC Davis MIND InstitutecoreStrategic or Co-development PartnerThe MIND Institute is a key international partner, collaborating on the Fragile X Clinical & Research Consortium, international conferences, and global outreach programs including the Colombia Project of Hope and support for Georgia and Serbia programs.
• Fragile X Clinical & Research Consortium (FXCRC)coreStrategic or Co-development PartnerNetwork of over 30 Fragile X specialty clinics coordinated by NFXF, providing clinical care, research participation opportunities, and treatment recommendations. Includes leading institutions such as Rush University Medical Center, Kennedy Krieger Institute, Cincinnati Children's Hospital, Texas Children's Hospital, and University of Minnesota Masonic Institute for the Developing Brain.
• International Fragile X Premutation RegistrycoreStrategic or Co-development PartnerNFXF coordinates the International Fragile X Premutation Registry, building a resource for research and clinical trial readiness for premutation-associated conditions including FXTAS and FXPOI.

Scale indicators8 records

Recent moves7 records

Expansion highlights5 records

Market position

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/national-fragile-x-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about National Fragile X Foundation