fabry

What fabry does

Fabry Support & Information Group (FSIG) is a U.S.-based nonprofit patient advocacy organization founded in 1996 to provide education, advocacy, and direct support for individuals and families affected by Fabry disease, a rare X-linked lysosomal storage disorder. Headquartered in Concordia, Missouri, FSIG operates a portfolio of community programs including the annual FSIG Expert Fabry Conference, Fabry Assist financial assistance (operating since 2010), a Cooling Vest Program, the FSIG Connection quarterly newsletter, regional meetings, a Women's Summit, a Young Adult Roundtable, and the Testing for Tots newborn screening advocacy initiative. The organization is governed by a Board of Directors and led by Co-founder and Executive Director Jack Johnson, supported by a staff team of approximately seven members including Directors of Operations and Programs, a Program Associate, an Accounts Manager, and additional staff.

FSIG's underlying technology is intentionally lightweight: the organization runs on the Neon One website and CRM platform used for free membership sign-up, event registration, and donor management. There is no proprietary product or technology stack; FSIG's value derives from its 30-year compounding of patient relationships, an extensive content and storytelling library, and convening power rather than software. Revenue is generated through three streams: tax-deductible individual donations, foundation grants (notably from the Genetic Disease Foundation for Testing for Tots), and pharmaceutical company sponsorships from manufacturers of Fabry therapies including Sanofi/Genzyme (Fabrazyme), Chiesi Global Rare Diseases (Elfabrio), Amicus Therapeutics (Galafold), and uniQure (gene therapy candidates).

FSIG's go-to-market is community-led and freemium: free membership delivers weekly research updates and event invitations, while in-person conferences and regional meetings deepen engagement with patients, caregivers, physicians, researchers, and industry partners. The 13th Annual & 30th Anniversary conference (April 2026, San Diego) drew 150+ attendees and was sponsored by four major Fabry therapy manufacturers. The organization further extends its reach through coalition work as a founding partner of the Lysosomal Storage Disease Advocacy Coalition (LSDAC), partnerships with international Fabry organizations, and emerging policy advocacy for newborn screening across multiple U.S. states.

Name

fabry

Legal name

Fabry Support & Information Group

Website

https://fabry.org

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

1–10 employees

Short description

Fabry Support & Information Group (FSIG) is a U.S. nonprofit founded in 1996 that provides education, advocacy, financial assistance, and community programs for individuals and families affected by Fabry disease, supported by donations, grants, and pharmaceutical sponsorships.

Ownership category

akta.pro rank

Headquarters

HQ city

Concordia

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Revenue model

1. Donations: Tax-deductible charitable donations from individuals that directly support the mission of improving quality of life for Fabry patients and families, expanding awareness, and ensuring the patient voice is heard.
2. Pharmaceutical Sponsorships: Conference and program sponsorships from pharmaceutical companies including Sanofi, Chiesi Global Rare Diseases, Amicus Therapeutics, and uniQure who support FSIG events and initiatives.
3. Foundation Grants: Grants from foundations such as the Genetic Disease Foundation for newborn screening initiatives and Testing for Tots program.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels11 records

Core offering

Fabry Support & Information Group (FSIG) is a nonprofit patient advocacy organization that delivers education, peer support, and direct financial assistance to individuals and families affected by Fabry disease. It operates programs including the Annual FSIG Expert Fabry Conference, Fabry Assist financial aid, a Cooling Vest Program, Regional Meetings, the Women's Summit, the Young Adult Roundtable, and Testing for Tots newborn screening advocacy. Members access these services through free membership that provides weekly research updates, patient stories, and invitations to educational events.

Product overview

Fabry Support & Information Group (FSIG) is a nonprofit patient support organization, not a technology product company. It offers a portfolio of support programs including the Annual FSIG Expert Fabry Conference, Fabry Assist financial assistance, Cooling Vest Program, FSIG Connection Newsletter, Regional Meetings, Women's Summit, Young Adult Roundtable, Testing for Tots newborn screening advocacy, and a free membership program. These are community support and education programs rather than technology products.

Differentiator

Problem solved

Functional benefit

Brands

• Testing for Tots: A program of FSIG focused on newborn screening advocacy for Fabry disease, working to add Fabry to state newborn screening panels across multiple states.

Products and services

• Annual FSIG Expert Fabry Conference
• Fabry Assist
• Cooling Vest Program
• FSIG Connection Newsletter
• Regional Meetings
• Women's Summit
• Young Adult Roundtable
• Testing for Tots
• Free Membership Program

Quantifiable outcome

• Hundreds of assistance requests fulfilled since 2010 through Fabry Assist program
• +2 more outcomes

Named customers3 records

Segments5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Sanofi / GenzymecoreGTM or Marketing PartnerDiamond sponsor of the 13th Annual & 30th Anniversary FSIG Expert Fabry Conference (2026). Manufacturer of Fabrazyme (agalsidase beta), an enzyme replacement therapy for Fabry disease. Listed as a supportive pharmaceutical partner in FSIG's About Us section.
• Chiesi Global Rare DiseasescoreGTM or Marketing PartnerDiamond sponsor of the 13th Annual & 30th Anniversary FSIG Expert Fabry Conference (2026). Manufacturer of Elfabrio (pegunigalsidase alfa), an enzyme replacement therapy for Fabry disease. Listed as a supportive pharmaceutical partner in FSIG's About Us section.
• Amicus TherapeuticscoreGTM or Marketing PartnerPlatinum sponsor of the 13th Annual & 30th Anniversary FSIG Expert Fabry Conference (2026). Manufacturer of Galafold (migalastat), an oral chaperone therapy for Fabry disease. Listed as a supportive pharmaceutical partner in FSIG's About Us section.
• uniQureminorGTM or Marketing PartnerGold sponsor of the 13th Annual & 30th Anniversary FSIG Expert Fabry Conference (2026). Developer of gene therapy candidates for Fabry disease.
• Lysosomal Storage Disease Advocacy Coalition (LSDAC)coreStrategic or Co-development PartnerNon-profit coalition of patient advocacy organizations dedicated to advancing public policy priorities for lysosomal storage disorders. FSIG is a founding partner along with National Fabry Disease Foundation, Gaucher Community Alliance, The MPS Society, National Neimann-Pick Foundation, and Testing for Tots. Focus areas include extending newborn screening, Medicare home infusion advocacy, increased research funding, and congressional awareness.
• National Fabry Disease FoundationminorStrategic or Co-development PartnerFounding partner of the Lysosomal Storage Disease Advocacy Coalition. Other Fabry supporting organization listed in FSIG's Community Connections.
• Fabry International NetworkminorStrategic or Co-development PartnerInternational network of Fabry patient organizations listed in FSIG's Community Connections section for additional resources and community support.
• Testing for TotscoreStrategic or Co-development PartnerA program of FSIG focused on early diagnosis advocacy for Fabry disease through newborn screening. Founded by Dr Brian and Mrs Tia Jones. Works at state and federal levels to add Fabry to newborn screening panels in multiple states.
• State Newborn Screening Committees and Medical Advisory CommitteesminorStrategic or Co-development PartnerTesting for Tots partners with local and state medical advisory committees to advance understanding and care for Fabry disease newborn screening. Active in Colorado, Georgia, Massachusetts, Nebraska, South Carolina, Utah, and Wisconsin.
• Canadian Fabry AssociationminorOthersCanadian Fabry patient organization listed in FSIG's Community Connections for additional information and community support beyond FSIG.
• Fabry AustraliaminorOthersAustralian Fabry patient organization listed in FSIG's Community Connections for additional information and community support.
• National Organization for Rare Disorders (NORD)minorStrategic or Co-development PartnerListed in FSIG's Community Connections as a helpful resource for the rare disease community, providing information and advocacy support.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• National Fabry Disease Foundation: The other U.S.-focused Fabry disease patient advocacy organization. Most directly comparable to FSIG as they serve the same patient population, compete for the same pharma sponsorships, and are co-founding partners of LSDAC.
• Fabry International Network: Global umbrella network of Fabry patient organizations linked via FSIG's Community Connections. Directly comparable mission of international Fabry patient support, advocacy, and information sharing.
• Lysosomal Storage Disease Advocacy Coalition (LSDAC): Coalition of LSD patient advocacy organizations co-founded by FSIG alongside the National Fabry Disease Foundation, Gaucher Community Alliance, MPS Society, and National Niemann-Pick Foundation. Directly comparable as the umbrella policy vehicle in which FSIG participates.
• Gaucher Community Alliance: Lysosomal storage disorder patient advocacy organization and fellow LSDAC founding partner. Directly comparable structure, mission, and rare-disease patient-support model within the same LSD therapeutic class as Fabry.
• National MPS Society: Mucopolysaccharidoses (MPS) patient advocacy organization and fellow LSDAC founding partner. Comparable rare-disease nonprofit structure, conference formats, and pharma-sponsorship model within the broader LSD space.
• National Niemann-Pick Foundation: Niemann-Pick disease patient advocacy organization and fellow LSDAC founding partner. Comparable rare lysosomal disease patient-support structure, programs, and pharma-sponsorship dynamics.

Regional players

• Canadian Fabry Association: Canadian Fabry disease patient advocacy organization listed in FSIG's Community Connections. Comparable mission and structure, but operates primarily in Canada rather than the U.S.
• Fabry Australia: Australian Fabry disease patient advocacy organization listed in FSIG's Community Connections. Comparable patient-support mission but focused on Australia.

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest U.S. rare disease umbrella advocacy organization. Comparable as a peer patient-advocacy entity, but operates broadly across all rare diseases rather than focusing on Fabry specifically.
• Every Life Foundation: U.S. rare disease public policy coalition linked via FSIG's Community Congress participation. Comparable broad rare-disease advocacy mandate versus FSIG's Fabry-specific focus.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks2 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@fabry
• LinkedInlinkedin.com/company/fabry-support-information-group
• Xx.com/fabryorg

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about fabry