The Life Raft Group

What The Life Raft Group does

The Life Raft Group (LRG) is a 501(c)(3) nonprofit organization, founded in 2002 and headquartered in Wayne, New Jersey, that supports patients with Gastrointestinal Stromal Tumor (GIST) and selected adjacent rare diseases through patient-powered research, education, and advocacy. Its core technical assets are an IRB-approved (Quorum IRB) GIST Patient Registry collecting real-world evidence from members in 63 countries, a Collaborative Tissue Bank for GIST specimens, a searchable GIST Clinical Trials Database, a GIST Specialist Database, and a Virtual GIST Tumor Board that connects clinicians for complex case review. These data assets have directly powered peer-reviewed publications, including a February 2026 JAMA Oncology study with 35 cancer centers across the U.S., Europe, and Japan (367 patients) and prior work in Cancer Investigation demonstrating that mutational testing is associated with superior survival outcomes.

The organization's product surface extends beyond data collection into patient services: educational events (GIST Days of Learning, biennial Life Fest), Expert Patient Training, a GIST Mentor Program, facilitator-led support groups, financial aid navigation, and the newer LRG Athletes Program (launched January 2025) for athletic fundraising. Specialized programs include the Pediatric & SDH-Deficient GIST Consortium and resources for related rare diseases such as Giant Cell Tumor, Tenosynovial Giant Cell Tumor, and liposarcoma through linked organizations. Distribution is delivered via the liferaftgroup.org website, a 61-country liaison network, healthcare-provider referrals (including partnerships with MD Anderson, NIH Clinic, and Columbia), social media, newsletters, and events, with all services provided free to patients.

Revenue is generated entirely through nonprofit channels: individual donations, charitable contributions processed via DonorPerfect, fundraising events (Water of Life whisky tasting, Night to Fight Cancer gala, Walk for Hope, Life Fest, LRG Athletes), and corporate/research partnerships including a Bayer Pharmaceuticals genomic testing initiative. The organization disburses research funding through programs such as its $60,000 Summer Splash Match research awards. Leadership is led by Executive Director Sara Rothschild (former VP of Medical Affairs at Bayer), with a data-and-research function headed by Senior Director Denisse Evans; recent board additions include Dr. Joseph Germino (former Bayer VP Medical Affairs), signaling deeper industry ties. No revenue figures are disclosed.

Name

The Life Raft Group

Legal name

The Life Raft Group

Website

https://liferaftgroup.org

Company type

Private

Founded year

1999

Operating status

Operating

Headcount range

11–50 employees

Short description

The Life Raft Group is a 501(c)(3) nonprofit that supports GIST (Gastrointestinal Stromal Tumor) patients globally through an IRB-approved patient registry, tissue bank, clinical trial matching, educational programs, and research collaborations spanning 35 cancer centers across 63 countries.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Membership Organizations (8600), Services-Health Services (8000)

akta.pro primary industry

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

akta.pro secondary industries

Clinical Trial Site Operations & Study Coordination (HLAGACAE), Specialty Therapeutic-Area CROs (e.g., oncology/rare disease) (HLAGAAAL)

Keywords

• Rare disease advocacy
• Patient support services
• Cancer patient registry
• GIST research nonprofit
• Patient-powered research

Headquarters

HQ city

Wayne

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, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: As a 501(c)(3) nonprofit organization, The Life Raft Group relies primarily on donations from individuals, families, and supporters to fund research, patient programs, and advocacy initiatives.
2. Fundraising Events: The organization hosts annual fundraising events including Water of Life (whisky tasting), Life Fest, Walk for Hope, LRG Athletes program, and Night to Fight Cancer galas.
3. Research Grants and Awards: The organization distributes research awards funded by donations to GIST researchers, such as the $60K Summer Splash Match raised in 2025 awarded to three researchers.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

The Life Raft Group operates a patient-powered research and support platform for people living with Gastrointestinal Stromal Tumor (GIST) and other rare cancers. Core offerings include an IRB-approved GIST Patient Registry, a Collaborative Tissue Bank, a GIST Clinical Trials Database, a GIST Specialist Database, educational programs (GDOLs, Life Fest), peer mentorship, support groups, financial aid, and a Pediatric & SDH-Deficient GIST Consortium. The organization drives real-world evidence research through academic and pharmaceutical partnerships and delivers advocacy and education to members in 63 countries.

Product overview

The Life Raft Group operates as a patient-powered research organization offering a unified platform of interconnected programs centered on its IRB-approved GIST Patient Registry and Tissue Bank. The core product portfolio includes patient registry data collection (LRG GIST Patient Registry), specimen storage (Tissue Bank), and clinical trial matching (GIST Clinical Trials Database). These are supported by educational offerings including Expert Patient Training, GDOLs (GIST Day of Learning), Life Fest biennial conferences, LRG Science publications, LRG Digital Library, and LRG Newsroom. Additional support services encompass the GIST Specialist Database, GIST Mentor Program, Support Groups, Financial Aid resources, and the LRG Athletes Program for fundraising. The Pediatric & SDH-Deficient GIST Consortium and Virtual GIST Tumor Board provide specialized research collaboration. Together these products enable patient empowerment, real-world evidence research, and global advocacy for GIST and rare disease communities.

Differentiator

Problem solved

Functional benefit

Brands

• LRG Patient Registry: IRB-approved patient registry collecting medical history and treatment information from GIST patients worldwide
• LRG Athletes Program
• Life Fest
• GIST Day of Learning (GDOL)

Products and services

• GIST Patient Registry IRB-approved patient registry collecting medical history, treatment data, and real-world evidence from GIST patients globally; serves as the foundation for LRG's patient-powered research and supports clinical trial development.
• Collaborative GIST Tissue Bank Repository collecting and storing patient tissue samples for GIST research and genomic testing initiatives.
• GIST Clinical Trials Database Searchable online database of ongoing GIST clinical trials enabling patients to find and learn about relevant research studies.
• GIST Specialist Database Searchable directory of GIST specialists in the U.S. and internationally enabling patients to locate expert medical care.
• GIST Mentor Program Peer support program matching GIST patients with trained mentors who have lived experience with the disease.
• Support Groups Facilitator-led patient and caregiver support groups providing emotional and practical support to the GIST community.
• Financial Aid for GIST Patients Financial assistance resources and information helping GIST patients with treatment-related expenses.
• GIST Days of Learning (GDOLs) Educational events bringing together patients, caregivers, and medical professionals for learning and connection around GIST management.
• Life Fest Biennial patient education and support event bringing patients, caregivers, and experts together for connection and education.
• Pediatric & SDH-Deficient GIST Consortium Research consortium advancing research and treatment for pediatric and SDH-deficient GIST subtypes.
• Virtual GIST Tumor Board Virtual collaborative platform connecting GIST specialists for complex case review and treatment guidance.
• Expert Patient Training Educational program that trains patients to take a larger role in their care and become expert advocates for their own GIST management.
• LRG Athletes Program Athletic fundraising program enabling patients and caregivers to channel fitness activities into advocacy and fundraising for the GIST community.

Quantifiable outcome

• Patients with mutational testing show superior survival outcomes compared to those without testing, per LRG registry data published in Cancer Investigation journal.
• +1 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration3 records

Feature4 records

Partnerships

14 partnerships are on record, tiered flagship, core and minor.

• 35 Leading Cancer Centers (U.S., Europe, Japan)flagshipStrategic or Co-development Partner · 26 February 2026International research collaboration with 35 cancer centers resulting in JAMA Oncology publication on adjuvant imatinib in KIT exon 9-mutated GIST. Study analyzed outcomes from 367 patients.
• Bayer PharmaceuticalscoreStrategic or Co-development Partner · 1 January 2021Research partnership to broaden access to comprehensive genomic testing (CGT) for GIST patients through Bayer's tissue testing initiative.
• Sarcoma CoalitioncoreStrategic or Co-development PartnerCollaboration with sarcoma patient organizations to advance advocacy, research, and support for sarcoma patients including GIST.
• Patient WorthycoreStrategic or Co-development PartnerPartnership to amplify patient stories and raise awareness for rare cancers including GIST.
• Triage CancercoreStrategic or Co-development PartnerCollaboration providing cancer-related legal and practical resources for GIST patients navigating insurance and employment issues.
• SPAGN (Sarcoma Patients EuroNet)coreStrategic or Co-development PartnerInternational partnership with European sarcoma patient network for global advocacy and information sharing.
• MD Anderson Cancer CenterflagshipStrategic or Co-development PartnerHost institution for annual GIST Summit and GDOL events. Major research collaboration partner for GIST treatment studies.
• Pediatric & SDH-Deficient GIST ConsortiumcoreStrategic or Co-development PartnerDedicated consortium advancing research and treatment for SDH-deficient GIST, a rare hereditary subtype affecting pediatric and young adult patients.
• Columbia Collaborative Research ProjectcoreStrategic or Co-development PartnerAcademic research partnership focused on GIST biology and treatment development.
• NIH CliniccoreStrategic or Co-development PartnerCollaboration with National Institutes of Health for GIST research and clinical care.
• Giant Cell Tumor OrganizationminorOthersLinked organization supported by LRG providing resources for Giant Cell Tumor patients.
• TGCT SupportminorOthersLinked organization supported by LRG providing resources for Tenosynovial Giant Cell Tumor patients.
• Liposarcoma SupportminorOthersLinked organization supported by LRG providing resources for liposarcoma patients.
• KRAS KickersminorStrategic or Co-development PartnerPatient advocacy organization co-founded by a caregiver, focused on KRAS-mutated cancers. Met at Miami Precision Biannual Conference.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases in the US, including GIST. Comparable through member patient organizations, research grants, and policy advocacy, though LRG is disease-specific while NORD is the broad incumbent.
• LIVESTRONG Foundation: Major cancer survivor support and advocacy nonprofit offering patient navigation, financial assistance, and community programs. Comparable through patient support services; serves all cancer types rather than a niche.
• Cancer Research Institute: Nonprofit funding immunology and cancer research with grant programs and scientific conferences. Comparable as a research-focused cancer nonprofit, though broader in scope than LRG's GIST focus.
• Pancreatic Cancer Action Network (PanCAN): Large-scale cancer patient advocacy nonprofit combining patient services, research funding, and policy advocacy. A scaled-up analog of LRG's model in a higher-prevalence cancer.

Direct peers

• Cholangiocarcinoma Foundation: Patient-driven nonprofit for a rare GI cancer with patient registry, research collaboration model, and pharma partnership approach that mirrors LRG's structure and operations.
• MPN Research Foundation: Patient-focused nonprofit advancing research for rare blood cancers via a patient registry, research grants, and pharma partnerships. Highly comparable operating model to LRG, applied to a different rare cancer.
• Children's Tumor Foundation: Nonprofit driving research and patient support for neurofibromatosis, a rare genetic disease. Comparable through disease-specific patient registry, research grants, and pharma partnership approach.
• Sarcoma Foundation of America: Nonprofit advocacy and research funder focused on sarcoma subtypes including GIST. Operates patient education, research grants, and awareness programs that overlap directly with LRG's mission in the same disease category.
• GIST Cancer Research Fund: Dedicated GIST-focused nonprofit funding research and supporting patients. Closest head-to-head peer for LRG given identical disease focus, with overlap in patient education and research grantmaking.

Regional players

• SPAGN (Sarcoma Patients EuroNet): European sarcoma patient advocacy network that is already a partner of LRG. Highly comparable mission (sarcoma patient support, research, advocacy) with a regional rather than global focus.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/liferaftgroup
• YouTubeyoutube.com/user/LifeRaftGroup
• Facebookfacebook.com/liferaftgroup
• LinkedInlinkedin.com/company/the-life-raft-group
• Instagraminstagram.com/liferaftgroup

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

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 The Life Raft Group