Desmoid Tumor Research Foundation

Name

Desmoid Tumor Research Foundation

Legal name

Desmoid Tumor Research Foundation

Website

https://dtrf.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Social Advocacy Organizations (8133)

SIC

Services-Commercial Physical & Biological Research (8731), Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

Keywords

• Rare disease research
• Patient advocacy services
• Medical research funding
• Tumor patient registry
• Nonprofit health foundation

Headquarters

HQ city

Suffern

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Technology or R&D, Marketing or Sales, Operations, Others

Revenue model

1. Individual Donations: The foundation accepts donations from individuals through its website, with various giving options including online donations, gifts in memory and honor, and workplace giving programs.
2. Corporate Partnerships: Partnerships with pharmaceutical companies including SpringWorks Therapeutics, Immunome, and Parabilis who support the mission through corporate sponsorships and ongoing collaboration.
3. Event Fundraising: Signature fundraising events including the annual Together We Will Weekend with Running for Answers 5K, golf events, and community fundraising initiatives.
4. Planned and Deferred Gifts: Donor-advised funds, bequests, planned gifts, and other legacy giving options for long-term supporter engagement.
5. Grants and Research Funding: Grant applications and research project funding to support desmoid tumor research initiatives.

Go-to-market motion2 records

Distribution channels6 records

Marketing channels10 records

Core offering

DTRF is a nonprofit foundation that funds and coordinates desmoid tumor research, operates a patient registry and natural history study, runs a virtual tumor board for clinician case consultations, hosts an annual patient conference (Together We Will Weekend), and publishes clinical guidelines including the Global Consensus Paper. The foundation connects patients, caregivers, clinicians, and researchers worldwide to accelerate research and improve care for an ultra-rare tumor affecting 900-1,500 new U.S. patients annually.

Product overview

The Desmoid Tumor Research Foundation operates as a patient advocacy and research coordination organization rather than a traditional product company. Its core offerings include the DTRF Patient Registry and Natural History Study (an online survey-based data collection platform), Virtual Tumor Board (a quarterly physician consultation forum), Research Coordination Core (providing research infrastructure, cell lines, and preclinical models), and the annual Together We Will Weekend patient conference. Supporting these programs are newsletters for patients and clinicians, a clinical trials directory, and the Global Consensus Paper on Desmoid Tumor Management - an evidence-based treatment guideline. The foundation also facilitates tissue donation through partnerships with research institutions. DTRF serves as the world's leading foundation dedicated to desmoid tumor research, advocacy, awareness, and patient support.

Differentiator

Problem solved

Functional benefit

Products and services

• DTRF Patient Registry and Natural History Study A dynamic participant-driven online platform that collects de-identified patient data through surveys about diagnosis, treatment, disease progression, and quality of life, informing a natural history study used by researchers to understand the disease process and develop treatment options. Hosted cooperatively with FDA and NORD.
• Virtual Tumor Board A quarterly teleconference service that allows physicians from anywhere in the world to submit and discuss desmoid tumor cases with leading specialists and receive input on challenging treatment paths.
• DTRF Research Coordination Core A centralized research infrastructure service that provides researchers with cell lines, frog and mouse models, radiomics working group support, Desmoid Tumor DepMap & CRISPR Project resources, an international pregnancy study site, and Patient-Reported Outcome (PRO) tool resources for desmoid tumor research.
• Together We Will Weekend (Annual Patient Conference) An annual in-person patient conference held in September featuring expert presentations on desmoid tumor treatments and research, patient and caregiver networking events, and the Running for Answers 5K fundraiser.
• Clinical Trials Directory An online directory resource listing active clinical trials available for desmoid tumor patients, helping patients and caregivers explore treatment options and participate in research studies.
• Global Consensus Paper on Desmoid Tumor Management An international evidence-based consensus guideline published in the European Journal of Cancer providing treatment recommendations, treatment types, and pain management approaches for desmoid tumors, available in both scientific and lay-summary formats.

Quantifiable outcome

• First FDA-approved medical therapy for desmoid tumors achieved after decade of collaboration (OGSIVEO/nirogacestat, November 2023)
• +3 more outcomes

Named customers8 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Twelve partnerships are on record, tiered core and secondary.

• SpringWorks TherapeuticscoreStrategic or Co-development PartnerCorporate partner supporting DTRF's mission through regular collaboration. SpringWorks received FDA approval for OGSIVEO (nirogacestat) - the first-ever medical therapy for desmoid tumors - after more than a decade of collaboration with advocates, patients, and medical professionals that DTRF helped facilitate. SpringWorks also offers the CareConnections patient support program.
• ImmunomecoreStrategic or Co-development PartnerCorporate partner collaborating with DTRF to advance desmoid tumor research and treatment options for patients.
• ParabiliscoreStrategic or Co-development PartnerCorporate partner working with DTRF to accelerate desmoid tumor research and expand treatment options.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerDTRF Patient Registry is a cooperative project with FDA and NORD. NORD hosts the registry platform on secure servers and provides infrastructure for rare disease data collection. DTRF also collaborates with NORD's Rare Disease Educational Support Program for conference scholarships.
• My Pediatric and Adult Rare Tumor (MyPART) NetworksecondaryStrategic or Co-development PartnerCollaboration with NCI's MyPART network for rare tumor research and patient advocacy alignment.
• SARC (Sarcoma Alliance for Research through Collaboration)coreStrategic or Co-development PartnerSARC is a key partner for identifying sarcoma centers and connecting patients with specialists. DTRF recommends SARC-designated centers for desmoid tumor care and collaborates on clinical trial infrastructure.
• Sarcoma AlliancecoreStrategic or Co-development PartnerLong-standing partner committed to identification, treatment, and cure of rare disorders. Sarcoma Alliance provides second opinion grants for patients and curates financial assistance resources.
• The Desmoid ProjectsecondaryStrategic or Co-development PartnerFounded for patients, by patients. Organization focused on determining unmet needs of desmoid tumor patient community, providing education, launching support groups, and developing healthcare navigation resources.
• National Comprehensive Cancer Network (NCCN)coreStrategic or Co-development PartnerNCCN-designated sarcoma centers are recommended by DTRF as preferred treatment locations. DTRF links to NCCN Patient Guidelines for soft tissue sarcoma.
• Boehringer IngelheimsecondaryStrategic or Co-development PartnerDTRF collaborated with Boehringer Ingelheim on the Global Consensus Paper revision published in 2024, led by DTRF Advisory Board members Dr. Peter Hohenberger, Dr. Bernd Kasper, and Dr. Alessandro Gronchi.
• Boehm Lab at Koch Institute, MITsecondaryStrategic or Co-development PartnerResearch partner for tissue donation program. Fresh desmoid tumor tissue samples collected through Pattern.org are sent to this lab for research purposes.
• International Desmoid Patient Advocacy GroupscoreStrategic or Co-development PartnerDTRF collaborates with international desmoid patient groups through the Annual Virtual Global Desmoid Tumor Roundtable, fostering connections among advocacy organizations worldwide.

Scale indicators8 records

Recent moves5 records

Expansion highlights4 records

Direct peers

• Chordoma Foundation: Single-disease rare cancer nonprofit that funds research, operates a biospecimen repository, drives drug development, and partners with NCI and pharma — highly analogous model to DTRF's desmoid tumor mission.
• Sarcoma Foundation of America: Patient advocacy and research funding organization for sarcomas broadly. Overlaps directly with DTRF's clinician/researcher engagement, research grants, and advocacy in the desmoid (a type of soft-tissue sarcoma) community.
• Children's Tumor Foundation: Disease-specific nonprofit (neurofibromatosis) that operates a patient registry, funds research grants, hosts annual conferences, and drives FDA-approved therapies. Closely comparable to DTRF in structure, scale, and rare-disease patient-advocacy model.
• Sarcoma Alliance: Long-standing DTRF partner; provides second-opinion grants, financial assistance, and patient navigation for sarcoma patients. Directly comparable patient-support services.
• The Desmoid Project: Patient-founded desmoid tumor organization focused on identifying unmet needs, education, support groups, and healthcare navigation. Already a DTRF partner; comparable mission and audience.
• Liddy Shriver Sarcoma Initiative: Sarcoma-focused nonprofit providing educational resources, research grants, and patient support — comparable to DTRF's clinical resource and research-funding model.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella nonprofit representing ~300 rare disease patient organizations. Already a direct DTRF partner (registry host and education collaborator), and represents the parent federation that DTRF operates within.
• American Cancer Society: Largest US cancer nonprofit with broad research, patient support, and advocacy programs. DTRF competes for donor dollars and clinician mindshare with this dominant incumbent.
• Pancreatic Cancer Action Network (PanCAN): Large single-disease cancer nonprofit with patient services, research funding, and advocacy — a scaled analog of DTRF that demonstrates the upside trajectory of disease-specific rare cancer nonprofits.

Emerging players

• MyPART Network (NCI): NCI's pediatric and adult rare tumor network — already a DTRF partner. Comparable government-funded rare tumor research and patient advocacy infrastructure.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat6 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xtwitter.com/intent/follow?source=followbutton&variant=1.0&screen_name=dtrfoundation
• YouTubevimeo.com/user18384904
• Facebookfacebook.com/desmoid
• LinkedInlinkedin.com/company/desmoid-tumor-research-foundation-dtrf-
• Instagraminstagram.com/dtrfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Desmoid Tumor Research Foundation