KAT6 Foundation

What KAT6 Foundation does

The KAT6 Foundation is a 501(c)(3) nonprofit organization founded in 2017 and headquartered in Chevy Chase, Maryland, that serves individuals and families affected by KAT6A and KAT6B syndromes — rare genetic conditions affecting gene regulation during development. The Foundation's core mission is to advance scientific research aimed at developing treatments for these syndromes and to spread awareness so they can be more easily identified, treated, and studied. As of the input data, the Foundation has 6 employees, supports 560+ registered patient cases across 70+ countries, and operates as the only 501(c)(3) entity specifically founded to support the international KAT6 community.

The Foundation's core technology and programmatic assets include the Patient Registry (hosted on the IAMRARE platform), which aggregates health and development data from affected families to help researchers identify patterns and accelerate studies; the iPSC Bank, a repository of induced pluripotent stem cells from KAT6A and KAT6B patients used for research; and the Research Network, which connects families with researchers and current studies. It also operates the Empowered Grant program, which provides direct funding for assistive equipment and therapy treatment to diagnosed individuals, and maintains a Published Research repository cataloguing peer-reviewed articles related to the syndromes. Community-facing programs include the annual KATwalk fundraising walk (in-person and virtual), the annual KAT6 Conference, and KAT6 Connect regional/virtual events, alongside Family Resources and Newly Diagnosed support materials. Distribution occurs through the Foundation's website, social media, the IAMRARE self-serve registry, and a merchandise storefront on Bonfire.

The Foundation's business model is purely donation-driven: it operates as a tax-exempt charitable organization with revenue generated through individual donations, family contributions, event-based fundraising (primarily KATwalk), and merchandise sales. All programmatic services are provided free to beneficiaries. The go-to-market motion is community-led — relying on volunteer recruitment, peer support through Facebook groups, awareness events, and newsletter-driven engagement rather than commercial sales channels. There are no disclosed funding rounds, institutional investors, or commercial revenue streams; the Foundation operates independently on charitable contributions.

Name

KAT6 Foundation

Legal name

KAT6 Foundation

Website

https://kat6foundation.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

The KAT6 Foundation is a 501(c)(3) nonprofit that supports families affected by KAT6A and KAT6B genetic syndromes through a patient registry, iPSC bank, research grants, the Empowered Grant program, and community events.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research Funding

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Grantmaking Foundations (813211)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient registry platform
• Research grant funding
• Stem cell biobank
• Community fundraising events

Headquarters

HQ city

Chevy Chase

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, Others

Revenue model

1. Donations and Charitable Contributions: The foundation operates as a 501(c)(3) nonprofit organization. Revenue is generated through tax-deductible donations from individuals, families, and supporters. Donations fund research initiatives, the Empowered Grant program for assistive equipment and therapies, and operational costs.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels6 records

Core offering

The KAT6 Foundation is a 501(c)(3) nonprofit that operates an international patient registry and induced pluripotent stem cell (iPSC) biobank for KAT6A and KAT6B syndromes, funds scientific research through grants and a research network, delivers the Empowered Grant program for assistive equipment and therapy, and runs community-building events such as KATwalk, the KAT6 Conference, and KAT6 Connect. All programs are provided free of charge to affected families and are sustained by donations and charitable contributions.

Product overview

The KAT6 Foundation is a 501(c)(3) nonprofit organization offering a unified portfolio of patient-centered programs and services for the KAT6A and KAT6B syndrome community. Its core offerings include the Patient Registry (a data collection platform connecting families with researchers), the iPSC Bank (stem cell repository for research), and the Empowered Grant program (financial assistance for assistive equipment and therapy). The Foundation also organizes community events including KATwalk (annual fundraising walks), the KAT6 Conference (annual gathering), and KAT6 Connect (regional/virtual meetups). Research initiatives are supported through Funded Projects, the Research Network, and Published Research repository. The organization provides support services via Family Resources and Newly Diagnosed Resources pages, supplemented by a Shop for merchandise.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Registry

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Parent Project Muscular Dystrophy (PPMD): PPMD is a single-disease 501(c)(3) nonprofit that funds research, maintains patient registries, and advocates for Duchenne muscular dystrophy families. It is a direct peer to KAT6 Foundation, demonstrating the same operating model applied to a different rare genetic condition.
• Cure SMA: Cure SMA is a 501(c)(3) dedicated to spinal muscular atrophy, funding research, supporting families, and helping drive approved therapies. It is a direct peer to KAT6 Foundation, illustrating how a single-disease nonprofit can evolve from community foundation to research catalyst as therapies advance.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation advocates for policy and federal funding for the rare disease community. It is comparable to KAT6 Foundation as a 501(c)(3) focused on accelerating research and treatment access for rare disease patients.
• Friedreich's Ataxia Research Alliance (FARA): FARA is a rare-disease nonprofit that funds research, manages a patient registry, and supports a global FA community. It is a direct peer to KAT6 Foundation, with an analogous model of combining research grants, registry data, and family support for an ultra-rare genetic disorder.
• Genetic Alliance: Genetic Alliance is a nonprofit that transforms patient-driven data into research-grade resources, including registries and biobanks for genetic conditions. It is a direct peer to KAT6 Foundation, which similarly aggregates patient data and bio-samples (iPSC bank) to accelerate research for a genetic syndrome.
• Global Genes: Global Genes is a 501(c)(3) rare disease patient advocacy organization that supports individual rare disease foundations and builds cross-disease communities. It is directly comparable to KAT6 Foundation as both serve as hubs for under-served rare disease patient populations, including operating registries and convening communities.

Emerging players

• Orphanet: Orphanet is a European reference portal providing curated data on rare diseases, including registries and expert resources. It is an emerging/regional peer to KAT6 Foundation, comparable in function as a knowledge and data infrastructure layer for rare disease communities.
• RARE-X: RARE-X is a tech-enabled nonprofit building federated rare disease patient data platforms to accelerate research. It is an emerging peer to KAT6 Foundation, which operates its own registry (IAMRARE); RARE-X represents an alternative platform approach to the same registry need.

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is the leading US umbrella organization for rare disease patient groups, advocating for policy, hosting patient registries, and providing educational resources across 7,000+ rare diseases. It is a broad incumbent peer to KAT6 Foundation, which operates as a single-disease organization within NORD's ecosystem.

Regional players

• EURORDIS – Rare Diseases Europe: EURORDIS is a European-level alliance representing rare disease patient organizations across Europe. It is comparable to KAT6 Foundation as a registry, advocacy, and research-enabling nonprofit, but operates at a regional rather than single-disease level.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat3 records

Key risks5 records

Key highlights5 records

Customer concentration

• Facebookfacebook.com/803280496369674
• LinkedInlinkedin.com/company/kat6-foundation

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 KAT6 Foundation