The Children’s Tumor Foundation
- Company typePrivate
- Founded1978
- HeadquartersNew York, United States
- Headcount51–100
- GTM type—
- OfferingServices
The Children’s Tumor Foundation firmographics
Firmographics- Name
- The Children’s Tumor Foundation
- Legal name
- Children's Tumor Foundation
- Website
- https://ctf.org
- Company type
- Private
- Founded year
- 1978
- Operating status
- Operating
- Headcount range
- 51–100 employees
- Ownership category
- akta.pro rank
The Children’s Tumor Foundation industry classification
Industry- Product category
- Medical Research Nonprofit / Rare Disease Patient Advocacy
- NAICS
- Scientific Research and Development Services (5417)
- SIC
- Services-Health Services (8000)
- akta.pro primary industry
- Neuro-oncology (HLAKAIAL)
- akta.pro secondary industry
- Oncology Gene Therapies (incl. oncolytic vectors & gene-modified approaches) (HLAAACAF)
Keywords
Where The Children’s Tumor Foundation is headquartered
LocationHeadquarters
- HQ city
- New York
- HQ country
- United States
- HQ region
- North America
Offices2 records
Markets served
The Children’s Tumor Foundation business model
Business model- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Fundraising: CTF generates revenue primarily through donations from individuals, foundations, and corporate sponsors. Fundraising activities include NF Walk, NF Endurance athletic events, Cupid's Undie Run, National Gala, and direct donation campaigns.
Go-to-market motion3 records
Distribution channels5 records
Marketing channels8 records
The Children’s Tumor Foundation product offering
Product offeringCore offering
The Children's Tumor Foundation (CTF) is a 501(c)(3) nonprofit medical research foundation that funds and coordinates research, drug development, and clinical care infrastructure for neurofibromatosis (NF1, NF2-SWN, schwannomatosis). Its core offerings include a global NF patient registry, a network of 70+ specialized NF clinics, annual research and patient conferences, educational resources for patients and families, and direct investment and partnership programs that have advanced two FDA-approved NF treatments.
Product overview
The Children's Tumor Foundation operates as a medical research nonprofit rather than a product company. Its offerings consist primarily of educational resources, patient registries, healthcare networks, and professional conferences. The NF Knowledge Series provides educational webinars on YouTube covering NF diagnosis and management. The NF Registry is a patient-driven database for accelerating research and matching patients to clinical trials. The NF Clinic Network provides access to over 70 specialized clinics across North America. The organization also hosts the annual NF Conference for professionals and the NF Summit for patients and families, along with downloadable educational materials including the 160-page NF Parent Guidebook.
Differentiator
Problem solved
Functional benefit
Products and services
- NF Registry A secure patient-driven registry for accelerating NF research, matching patients to clinical trials, and enabling participation in advanced scientific research on all forms of NF. Used by NF patients globally.
- NF Clinic Network A network of over 70 specialized NF clinics across North America providing comprehensive NF care to more than 20,000 patients annually.
- NF Conference An annual professional conference of NF researchers, clinicians, and industry experts that advances collaboration, research, and clinical care.
- NF Summit An annual patient and family conference offering the latest NF research updates, expert presentations, and community connection opportunities.
- NF Resource Library A digital library containing fact sheets, brochures, and videos about NF and ongoing research, available in multiple languages.
- NF Parent Guidebook A 160-page guidebook for parents of children living with NF1, providing comprehensive information about the condition and management strategies.
Quantifiable outcome
- 2 FDA-approved drugs for NF1: Koselugo (2020) and Gomekli (2025)
- +5 more outcomes
Companies that use The Children’s Tumor Foundation
Customer profileNamed customers2 records
Segments3 records
Ideal customer profiles4 records
The Children’s Tumor Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
The Children’s Tumor Foundation partnerships and signals
Strategic signalPartnerships
Seven partnerships are on record, tiered core and minor.
- CureAge TherapeuticscoreCTF co-founded and launched CureAge Therapeutics in 2025 - the first-ever gene therapy company dedicated to developing treatments for NF1. CureAge has already achieved key preclinical milestones and is advancing toward first-in-human studies.
- SpringWorks TherapeuticscoreCTF helped identify and reposition a shelved Pfizer drug for NF, leading to the transfer to SpringWorks Therapeutics (spun off from Pfizer). The drug (mirdametinib/Gomekli) received FDA approval in 2025. SpringWorks was subsequently acquired by Merck KGaA for $3.4 billion. CTF supported recruitment for clinical trials and worked closely with SpringWorks to deepen understanding of NF.
- HealxcoreCTF's investment accelerates the development of Healx's drug HLX-1502, which has been granted Fast Track designation by the FDA for NF1 treatment.
- NFlection TherapeuticscoreCTF's early impact investment in NFlection Therapeutics supports NFX-179, a Phase 3 topical gel for cutaneous neurofibroma (cNF) skin tumors.
- PfizercoreCTF brokered a deal with Pfizer to license a shelved drug candidate to spin-off SpringWorks Therapeutics, which ultimately received FDA approval and was acquired by Merck KGaA for $3.4 billion.
- NF Clinic Network (70+ clinics)coreCTF established the NF Clinic Network to ensure access to high-quality NF care, now spanning over 70 locations across North America serving 20,000+ patients annually.
- Cleveland ClinicminorCleveland Clinic and CTF partnered for 'Day of Hope and Progress' event on February 28, 2026, bringing together patients, families, and clinicians.
Scale indicators15 records
Recent moves9 records
Expansion highlights6 records
The Children’s Tumor Foundation competitors and assessment
Company assessmentDirect peers
- Muscular Dystrophy Association: 501(c)(3) nonprofit funding neuromuscular disease research, running a multi-clinic care network, and partnering with pharma on rare-disease drug development — closest structural analog to CTF, focused on a different rare genetic condition.
- Cystic Fibrosis Foundation: Patient-driven nonprofit that funded the bench-to-bedside development of CF modulators (e.g., Kalydeco) and runs a nationwide care network — the prototype rare-disease foundation that catalyzed pharma investment, with a comparable registry/clinic/trial model to CTF.
- Alex's Lemonade Stand Foundation: Pediatric cancer research foundation funding young investigators and clinical trials; structurally similar to CTF but in childhood oncology, sharing the young-investigator grant model and emphasis on early-career researchers entering the field.
- St. Baldrick's Foundation: Volunteer-driven childhood cancer research funder with a similar event-based fundraising model (head-shaving events akin to Cupid's Undie Run) and significant grant-making to pediatric oncology research.
- Tuberous Sclerosis Alliance: Patient-founded rare genetic disease foundation running a clinic network, research grants, and advocacy — analogous structure to CTF but in tuberous sclerosis complex, with similar tumor-overgrowth biology overlap.
- Children's Cancer Research Fund: Pediatric cancer foundation funding research and clinical trials with a similar donor-led operating model; comparable in size and structure to CTF, focused on adjacent (cancer) rather than directly overlapping indications.
- Parent Project Muscular Dystrophy: Patient-led rare-disease nonprofit driving Duchenne muscular dystrophy drug development, partnering with pharma sponsors, and running registry/clinic infrastructure — nearly identical operating model to CTF in a different rare genetic condition.
Broad incumbents
- National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases in the U.S.; not a direct disease-specific peer but the closest "industry" incumbent operating across the same regulatory, reimbursement, and research-funding terrain CTF navigates for NF specifically.
- American Cancer Society: U.S. cancer research nonprofit with a vastly larger research-grants and patient-support footprint — broader in scope than CTF, but engages the same pharma/biotech partners on overlapping MEK-inhibitor and oncology drug-development conversations.
- St. Jude Children's Research Hospital: Pediatric research hospital and treatment network focused on childhood catastrophic diseases including NF; shares CTF's pediatric clinical-trial and clinic-network ethos and is a frequent research collaborator, but at much larger institutional scale.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat6 records
Key risks7 records
Key highlights8 records
Customer concentration
The Children’s Tumor Foundation social profiles
Digital presenceThe Children’s Tumor Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
The Children’s Tumor Foundation leadership team
Management profileNumber of profiles
Profiles5 records
The Children’s Tumor Foundation subsidiaries and ownership
Company hierarchySubsidiaries1 record
The Children’s Tumor Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
The Children’s Tumor Foundation M&A and investment
M&A and investmentM&A
Investments1 record
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about The Children’s Tumor Foundation
What does The Children’s Tumor Foundation do?
The Children's Tumor Foundation (CTF) is a 501(c)(3) nonprofit medical research foundation that funds and coordinates research, drug development, and clinical care infrastructure for neurofibromatosis (NF1, NF2-SWN, schwannomatosis). Its core offerings include a global NF patient registry, a network of 70+ specialized NF clinics, annual research and patient conferences, educational resources for patients and families, and direct investment and partnership programs that have advanced two FDA-approved NF treatments.
Is The Children’s Tumor Foundation a public or private company?
The Children’s Tumor Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The Children’s Tumor Foundation founded?
The Children’s Tumor Foundation was founded in 1978. It employs 51 to 100 people.
Where is The Children’s Tumor Foundation based?
The Children’s Tumor Foundation is headquartered in New York, United States, in the North America region.
How does The Children’s Tumor Foundation make money?
One revenue line is on record: donations and Fundraising.
Who are The Children’s Tumor Foundation's main competitors?
Direct peers on record are Muscular Dystrophy Association, Cystic Fibrosis Foundation, Alex's Lemonade Stand Foundation, St. Baldrick's Foundation, Tuberous Sclerosis Alliance, Children's Cancer Research Fund and Parent Project Muscular Dystrophy. Broad incumbents are National Organization for Rare Disorders (NORD), American Cancer Society and St. Jude Children's Research Hospital.
Does The Children’s Tumor Foundation have an API?
No public API is recorded for The Children’s Tumor Foundation.
What industry is The Children’s Tumor Foundation in?
The Children’s Tumor Foundation's product category is Medical Research Nonprofit / Rare Disease Patient Advocacy. Its primary akta.pro industry code is HLAKAIAL, Neuro-oncology, with a secondary code of HLAAACAF, Oncology Gene Therapies (incl. oncolytic vectors & gene-modified approaches). Its NAICS code is 5417 and its SIC code is 8000.