KBG Foundation
The KBG Foundation is an all-volunteer 501(c)(3) nonprofit that supports patients and families affected by KBG syndrome through a patient registry, research seed grants, and a regional family network across the US.
- Company typePrivate
- Founded2015
- HeadquartersManchester, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What KBG Foundation does
The KBG Foundation is an independent, all-volunteer 501(c)(3) nonprofit organization founded in June 2015 and headquartered in Manchester, Maryland. It is the only US-based nonprofit exclusively devoted to KBG syndrome, a rare genetic disorder caused by ANKRD11 mutations. The foundation serves affected patients and families globally through three core programs: the KBG Natural History Study (a HIPAA- and GDPR-compliant patient registry powered by Across Healthcare's Matrix platform), the Seed Funding Grant Program (awards of up to $10,000 to certified researchers, with five grants totaling approximately $50,000 issued in 2022-2023), and the KBG Family Network (a six-region US ambassador program with planned international expansion). Supporting offerings include multilingual downloadable educational resources vetted by a Scientific Advisory Board, an annual KBG Syndrome Awareness Day on June 11, and a merchandise store.
KBG Foundation firmographics
Firmographics- Name
- KBG Foundation
- Legal name
- KBG Foundation
- Website
- https://kbgfoundation.org
- Company type
- Private
- Founded year
- 2015
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The KBG Foundation is an all-volunteer 501(c)(3) nonprofit that supports patients and families affected by KBG syndrome through a patient registry, research seed grants, and a regional family network across the US.
- Ownership category
- akta.pro rank
KBG Foundation industry classification
Industry- Product category
- Rare Disease Patient Advocacy Services
- NAICS
- Voluntary Health Organizations (813212), Child and Youth Services (62411), Other Individual and Family Services (624190)
- SIC
- Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
Keywords
Where KBG Foundation is headquartered
LocationHeadquarters
- HQ city
- Manchester
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
KBG Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Others, Technology or R&D
Revenue model
- Individual Donations: The foundation receives donations from individuals, families, and supporters through its website using PayPal. These contributions fund research programs, family support initiatives, and awareness activities.
- Corporate Donations: Corporate contributions and sponsorships that support the foundation's programs and research initiatives.
- Fundraising Events: Community-led fundraising events organized by families and supporters, such as fun runs and awareness events, to generate donations for the foundation's work.
- Merchandise Sales: Sale of KBG Syndrome Awareness merchandise including shirts, pillows, and hats through the foundation's merchandise store.
Go-to-market motion1 record
Distribution channels4 records
Marketing channels10 records
KBG Foundation product offering
Product offeringCore offering
KBG Foundation is an all-volunteer 501(c)(3) nonprofit that supports families affected by KBG syndrome, an ultra-rare genetic disorder linked to the ANKRD11 gene. Its core offerings include the KBG Natural History Study patient registry (powered by the Across Healthcare Matrix platform), a Seed Funding Grant Program awarding up to $10,000 to researchers studying KBG syndrome, and the KBG Family Network connecting families through six U.S. regional ambassadors. Supporting offerings include multilingual downloadable educational resources vetted by the Scientific Advisory Board, the annual KBG Syndrome Awareness Day on June 11, and an awareness merchandise store.
Product overview
KBG Foundation operates as a nonprofit organization offering a suite of programs and resources for KBG syndrome patients, families, and researchers. The core offerings include the KBG Natural History Study (a patient registry powered by Across Healthcare Matrix platform), the Seed Funding Grant Program for research, and the KBG Family Network connecting families through regional ambassadors. Supporting products include educational downloads vetted by the Scientific Advisory Board, annual Awareness Day activities, merchandise, and the 8 Rational Tips guide for newly diagnosed families.
Differentiator
Problem solved
Functional benefit
Products and services
- KBG Natural History Study / Patient Registry A patient registry powered by the Across Healthcare Matrix platform that collects de-identified data from people with KBG syndrome through questionnaires. The study creates a comprehensive data pool for researchers to advance understanding and treatment of the condition, and is HIPAA- and GDPR-compliant.
- Seed Funding Grant Program A research funding program that awards grants of up to $10,000 to certified researchers studying KBG syndrome and ANKRD11 gene mutations, expediting investigative research and enabling projects exploring potential treatments to move forward. Five grants totaling $50,000 were awarded in 2022-2023.
- KBG Family Network A regional ambassador program that connects families through six regional coordinators across the United States (Pacific, Rocky Mountain, Southwest, Midwest, Southeast, Northeast), enabling meet-ups, resource sharing, and Family Days and Clinic Days events.
- KBG Merchandise Store Online store selling KBG syndrome merchandise including shirts, hats, and pillows, with proceeds supporting awareness efforts and foundation fundraising.
- KBG Syndrome Awareness Day Annual awareness campaign celebrated on June 11 (a reference to the ANKRD11 gene), featuring social media graphics, merchandise, proclamation guides, and activities to raise awareness about KBG syndrome globally.
Quantifiable outcome
- 200+ confirmed KBG syndrome cases identified (up from 60 in 2013) through increased awareness and early diagnosis efforts
- +3 more outcomes
Companies that use KBG Foundation
Customer profileNamed customers1 record
Segments4 records
Ideal customer profiles4 records
KBG Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Integration4 records
AI capability4 records
Feature2 records
KBG Foundation partnerships and signals
Strategic signalPartnerships
Eight partnerships are on record, tiered minor, core and flagship.
- Simons SearchlightminorCollaboration for KBG syndrome research, linking the foundation's patient community with Simons Searchlight's research programs for ANKRD11 gene studies.
- Across HealthcarecoreKBG Foundation contracted with Across Healthcare to launch its first patient registry using the Matrix platform. Matrix connects patients, caregivers, providers, and researchers to collect and store de-identified data for research purposes.
- Genetic Alliance UKcoreKBG Foundation joined Genetic Alliance UK to elevate awareness of KBG syndrome and connect more patients with each other and the research community. The UK-based organization advocates for people with genetic and rare conditions.
- National Organization for Rare Disorders (NORD)flagshipKBG Foundation became a Platinum member of NORD, gaining access to major rare disease stakeholders, promotional opportunities, educational webinars, and other member benefits. NORD is the leading independent advocacy organization for rare disease patients and families in the US.
- FDNA (Face2Gene)corePartnership to use facial analysis technology for earlier diagnosis of KBG syndrome. Clinicians helped train FDNA's Face2Gene software to recognize clinical signs of KBG syndrome. Results are available globally to experts for diagnosis and treatment.
- BEOND Study (CEBra Network)minorKBG Foundation participates in the BEOND study of behavior, with Dr. Karen Low instrumental in including KBG syndrome in this ongoing research initiative.
- Beyond the DiagnosisminorPatricia Weltin, co-author of KBG syndrome research, leads Beyond the Diagnosis - a traveling art exhibit of rare disease children that has fostered connections across many rare diseases.
- Epilepsy Association of UtahminorKBG Foundation was founded in 2015 as an affiliate of the Epilepsy Association of Utah before becoming an independent organization.
Scale indicators6 records
Recent moves9 records
Expansion highlights6 records
KBG Foundation competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): The leading U.S. independent advocacy organization for rare disease patients and families, of which KBG Foundation is a Platinum member. NORD operates as an umbrella organization across many rare diseases, providing infrastructure, policy advocacy, and educational resources comparable to what KBG Foundation aims to deliver for KBG syndrome specifically.
- Genetic Alliance UK: UK-based alliance advocating for people affected by genetic, rare, and undiagnosed conditions. KBG Foundation is a member, and Genetic Alliance UK serves a comparable role in the UK for the broader rare disease community, providing convening, advocacy, and resource infrastructure that mirrors KBG Foundation's mission.
- EveryLife Foundation for Rare Diseases: U.S. advocacy organization focused on rare disease policy and drug development. Operates at the policy and ecosystem level rather than serving a single disease, but is a comparable nonprofit advocacy organization in the rare disease space.
- EURORDIS - Rare Diseases Europe: European umbrella organization for rare disease patient organizations comparable to the role NORD plays in the U.S. Many disease-specific foundations (like KBG Foundation) engage with EURORDIS for European advocacy and cross-border research collaboration.
Direct peers
- Smith-Magenis Syndrome Foundation: U.S. nonprofit focused on a rare genetic disorder with similar programs: family network, research grants, patient registry, and awareness campaigns. The closest comparable model for a small, volunteer-led, disease-specific rare disease foundation.
- Phelan-McDermid Syndrome Foundation: A U.S.-based nonprofit dedicated to a specific rare genetic syndrome with similar organizational structure: family support, research funding, patient registry, and awareness. Operates as a disease-specific patient advocacy organization with comparable volunteer-driven programs and donor base.
- International Rett Syndrome Foundation: A rare genetic disorder foundation with family support, research funding, patient registries, and international scientific conferences. While more established than KBG Foundation, it represents a comparable model for a disease-specific patient advocacy organization that has scaled beyond volunteer operations.
- Cornelia de Lange Syndrome Foundation: Nonprofit supporting individuals and families affected by a rare genetic syndrome with similar programs: family support, research funding, regional networks, and awareness. Comparable in scale and mission to KBG Foundation as a disease-specific patient advocacy organization.
- Dup15q Alliance: A rare chromosomal disorder advocacy organization focused on family support, research funding, and clinician education. Operates with similar programs (family network, scientific advisory board, research grants) and a comparable all-volunteer lean structure.
Others
- Simons Searchlight: A research program funded by the Simons Foundation that studies rare genetic neurodevelopmental disorders including ANKRD11 (the gene associated with KBG syndrome). A direct research partner that intersects with the foundation's scientific mission and registry effort.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
KBG Foundation social profiles
Digital presenceKBG Foundation compliance and trust
Trust signalCompliance3 records
KBG Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
KBG Foundation leadership team
Management profileNumber of profiles
Profiles8 records
KBG Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
KBG Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about KBG Foundation
What does KBG Foundation do?
KBG Foundation is an all-volunteer 501(c)(3) nonprofit that supports families affected by KBG syndrome, an ultra-rare genetic disorder linked to the ANKRD11 gene. Its core offerings include the KBG Natural History Study patient registry (powered by the Across Healthcare Matrix platform), a Seed Funding Grant Program awarding up to $10,000 to researchers studying KBG syndrome, and the KBG Family Network connecting families through six U.S. regional ambassadors. Supporting offerings include multilingual downloadable educational resources vetted by the Scientific Advisory Board, the annual KBG Syndrome Awareness Day on June 11, and an awareness merchandise store.
Is KBG Foundation a public or private company?
KBG Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was KBG Foundation founded?
KBG Foundation was founded in 2015. It employs 1 to 10 people.
Where is KBG Foundation based?
KBG Foundation is headquartered in Manchester, United States, in the North America region.
How does KBG Foundation make money?
Four revenue lines are on record. Individual Donations are the primary driver. The others are corporate Donations, fundraising Events and merchandise Sales.
Who are KBG Foundation's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), Genetic Alliance UK, EveryLife Foundation for Rare Diseases and EURORDIS - Rare Diseases Europe. Direct peers are Smith-Magenis Syndrome Foundation, Phelan-McDermid Syndrome Foundation, International Rett Syndrome Foundation, Cornelia de Lange Syndrome Foundation and Dup15q Alliance. Simons Searchlight is listed as an others.
Does KBG Foundation have an API?
No public API is recorded for KBG Foundation.
What industry is KBG Foundation in?
KBG Foundation's product category is Rare Disease Patient Advocacy Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 813212 and its SIC code is 8300.