CFC International
CFC International is a U.S.-based nonprofit founded in 1999 that supports more than 1,200 families worldwide affected by Cardio-facio-cutaneous syndrome through advocacy, education, research grants, an AI-integrated patient registry, and a global volunteer liaison network.
- Company typePrivate
- Founded1999
- HeadquartersLargo, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What CFC International does
CFC International (legal name: Cardio Facio Cutaneous syndrome International) is a U.S.-based non-profit patient advocacy and research organization founded in 1999 and headquartered in Largo, Florida. It serves families and caregivers affected by Cardio-facio-cutaneous (CFC) syndrome — an ultra-rare genetic Ras/MAPK pathway disorder — connecting more than 1,200 families across North America, South America, Europe, Asia Pacific, the Middle East, and Asia. Its core programs include the Family Liaisons volunteer mentorship network, the Family Connect monthly newsletter, educational webinars, support groups, family medical conferences, patient emergency micro grants, and the annual Unstoppably Bold Day awareness event.
The organization's technology and research footprint centers on the CITIZEN Patient Registry, a centralized de-identified patient data platform built in partnership with CITIZEN Health that incorporates integrative AI tools to accelerate CFC syndrome research. It also operates the Lillian's Legacy Research Grant program — a named memorial fund that has disbursed over $250,000 in research funding, including a $50,000 award in 2025 to Brigham and Women's Hospital for seizure-mechanism research — and publishes a Research & Clinical Trials information hub, a Zotero-based research library, and an interactive CFC World Map showing the geographic distribution of registered families.
CFC International does not sell products or services. It is funded through donations, fundraising events (including an annual golf tournament and JustGiving-hosted peer-to-peer fundraisers), and grants, and it is governed by a volunteer Board of Directors led by CEO Tuesdi Dyer and President Alexis Nash. It maintains core memberships across the rare-disease advocacy ecosystem, including NORD, Global Genes, Genetic Alliance, the Rasopathies Network, and the Children's Tumor Foundation, and operates with a small staff of 1–10 employees supplemented by a country-level volunteer liaison network.
CFC International firmographics
Firmographics- Name
- CFC International
- Legal name
- Cardio Facio Cutaneous syndrome International
- Website
- https://cfcsyndrome.org
- Company type
- Private
- Founded year
- 1999
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- CFC International is a U.S.-based nonprofit founded in 1999 that supports more than 1,200 families worldwide affected by Cardio-facio-cutaneous syndrome through advocacy, education, research grants, an AI-integrated patient registry, and a global volunteer liaison network.
- Ownership category
- akta.pro rank
Where CFC International is headquartered
LocationHeadquarters
- HQ city
- Largo
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
CFC International business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales
Distribution channels3 records
Marketing channels5 records
CFC International product offering
Product offeringCore offering
CFC International is a nonprofit patient advocacy organization that supports individuals and families affected by Cardio-facio-cutaneous (CFC) syndrome, a rare genetic disorder caused by mutations in MAPK pathway genes. The organization funds research, connects families, advocates for treatments, and operates the CITIZEN Patient Registry, a natural history study that uses AI to de-identify participant data for research use.
Product overview
CFC International operates as a non-profit patient advocacy and research organization — not a software technology company — offering a portfolio of patient-facing programs and research support services. The core offering is a coordinated set of support, education, and research-enabling programs including Family Liaisons (parent mentor connections), the CITIZEN Patient Registry (a centralized, AI-integrated de-identified data registry), Lillian's Legacy Research Grant (a named grant funding CFC syndrome research), Research & Clinical Trials information hub, and a global CFC World Map. These programs are supplemented by family medical conferences, webinars, support groups, patient emergency micro grants, and an annual awareness event (Unstoppably Bold Day). There is no commercial software product, platform, or API offering.
Differentiator
Problem solved
Functional benefit
Companies that use CFC International
Customer profileSegments1 record
Ideal customer profiles2 records
CFC International technology and API
TechnologyAPI detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
CFC International partnerships and signals
Strategic signalPartnerships
Eight partnerships are on record, tiered core and minor.
- National Organization for Rare Disorders (NORD)coreCFC International is a proud member of NORD, a federation of voluntary health organizations dedicated to helping people with rare orphan diseases. This membership provides access to resources, advocacy support, and collaboration opportunities within the rare disease community.
- Global GenescoreCFC International is affiliated with Global Genes, a leading rare disease patient advocacy organization that connects over 500 global organizations under a unifying symbol of hope.
- Genetic AlliancecoreCFC International is a member of Genetic Alliance, a world-leading nonprofit health advocacy organization that engages individuals, families, and communities to transform health. The network includes over 1,200 disease-specific advocacy organizations.
- Rasopathies NetworkcoreCFC International collaborates with the Rasopathies Network, an organization connecting syndromes including CFC, Costello, Leopard/NSML, NF1, and Noonan that share the Ras/MAPK pathway. These syndromes affect approximately 1 in 1,000 individuals.
- CITIZEN HealthcoreCFC International partnered with CITIZEN to develop a centralized patient registry with integrative AI tools that connects researchers, patients, and families to accelerate CFC syndrome research.
- Brigham and Women's HospitalcoreRecipient of CFC International's $50,000 Lillian's Legacy Research Grant for Dr. Sattar Khoshkhoo's research on seizures in CFC syndrome.
- Children's Tumor FoundationminorListed as a member organization, collaborating within the rare disease and Rasopathy community.
- Dawn G. FoundationminorListed as a member organization within the foundation alliance.
Scale indicators5 records
Recent moves6 records
Expansion highlights5 records
CFC International competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Federation of voluntary health organizations dedicated to rare diseases. CFC International is a member; NORD operates as a broad umbrella with policy, research, and patient support programs that span all rare conditions.
- EveryLife Foundation for Rare Diseases: Public policy advocacy organization dedicated to accelerating biotech innovation for rare diseases. Operates across the rare disease ecosystem with policy and funding initiatives comparable to CFC International's advocacy focus but at much greater scale.
- Genetic Alliance: World-leading nonprofit health advocacy network including over 1,200 disease-specific advocacy organizations. CFC International is a member; Genetic Alliance operates as a broad umbrella supporting genetic and rare disease communities.
- Global Genes: Leading rare disease patient advocacy organization connecting over 500 global organizations under a unifying symbol of hope. CFC International is affiliated with Global Genes and shares its patient-advocacy mission across the broader rare disease landscape.
Regional players
- EURORDIS - Rare Diseases Europe: European alliance of rare disease patient organizations. Comparable in mission to CFC International but operates regionally across Europe rather than as a single-condition US-based organization.
Direct peers
- Noonan Syndrome Foundation: Advocacy and research organization serving the Noonan syndrome community, another Ras/MAPK pathway disorder. Directly comparable in patient advocacy, family support, and research grantmaking mission.
- Costello Syndrome Family Network: Patient advocacy and family support organization for Costello syndrome, a sibling condition to CFC within the Rasopathies family. Highly comparable non-profit advocacy model, family liaison approach, and research grant mission.
- NF Network: Patient advocacy organization for neurofibromatosis, a Rasopathy condition. Operates a closely analogous model of family support, regional chapters, and research funding, and is a Rasopathies Network collaborator of CFC International.
- Children's Tumor Foundation: Leading research and advocacy organization for neurofibromatosis (NF1, NF2, schwannomatosis), which is part of the Rasopathies family. Listed as a CFC International partner and operates a comparable research grant and patient support model at larger scale.
- Rasopathies Network: Umbrella advocacy organization connecting syndromes sharing the Ras/MAPK pathway, including CFC, Costello, Noonan, and NF1. Direct strategic partner of CFC International with highly comparable mission, structure, and stakeholder community.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights6 records
Customer concentration
CFC International social profiles
Digital presenceCFC International financial estimates
Financial estimateRevenue estimate
Valuation estimate
CFC International leadership team
Management profileNumber of profiles
CFC International funding detail
Funding detailFunding overview
Funding rounds
Investors
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CFC International M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about CFC International
What does CFC International do?
CFC International is a nonprofit patient advocacy organization that supports individuals and families affected by Cardio-facio-cutaneous (CFC) syndrome, a rare genetic disorder caused by mutations in MAPK pathway genes. The organization funds research, connects families, advocates for treatments, and operates the CITIZEN Patient Registry, a natural history study that uses AI to de-identify participant data for research use.
Is CFC International a public or private company?
CFC International is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was CFC International founded?
CFC International was founded in 1999. It employs 1 to 10 people.
Where is CFC International based?
CFC International is headquartered in Largo, United States, in the North America region.
Who are CFC International's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), EveryLife Foundation for Rare Diseases, Genetic Alliance and Global Genes. EURORDIS - Rare Diseases Europe is listed as a regional player. Direct peers are Noonan Syndrome Foundation, Costello Syndrome Family Network, NF Network, Children's Tumor Foundation and Rasopathies Network.
Does CFC International have an API?
No public API is recorded for CFC International.