Follicular Lymphoma Foundation

What Follicular Lymphoma Foundation does

The Follicular Lymphoma Foundation (FLF) is a UK-registered charity (Charity No. 1185091, Company No. 11943477) founded in 2019, with a parallel US 501(c)(3) entity, headquartered in London at 417 Finchley Road. Its mission is to find a cure for follicular lymphoma (FL), a slow-growing non-Hodgkin lymphoma affecting more than one million patients worldwide. FLF serves three primary audiences: FL patients and caregivers, haematologists/oncologists/FL researchers, and the broader FL community. It operates through a small team of approximately 16 staff led by Global CEO Emma France (appointed February 2025) and Chief Medical Officer Dr Mitchell Smith, with scientific and industry advisors including Prof Jessica Okosun (Barts Cancer Institute) and Dr David Kennard (30+ years in pharma).

FLF's core offerings fall into four areas: (1) free educational resources via the "Your Support Hub" (FAQs, glossaries, personal stories, Living Well with FL content), the "Science Simplified" blog, and a webinar series featuring leading FL clinicians and patient advocates; (2) structured patient involvement through the FL Voices network (launched 2024) and the Super Supporters programme (operating since 2019), which embed patients into survey design, research funding reviews, and resource co-creation; (3) three purpose-built research programmes — CURE FL, FL Biomarker Discovery, and PETReA Plus — which fund and coordinate FL-specific research, including an observational study of newly diagnosed UK patients; and (4) an annual Global Patient Survey that in 2025 reached 1,042 adults living with FL across 52 countries, generating proprietary real-world evidence on patient experiences that is used to inform research priorities and advocacy.

FLF's business model is that of a non-profit organization: it does not sell products or services and provides all patient-facing resources free of charge. Revenue comes from three streams: individual donations (processed via Stripe, PayPal, and GoCardless, including the Crypto for a Cure programme), corporate and pharmaceutical sponsorship (AstraZeneca, Genmab, AbbVie, Ipsen, Incyte, BMS, BeiGene, Kite Gilead, BioInvent, Regeneron, Novartis, and others funding named programmes such as ASH Accelerating the Cure, the Global Patient Survey, satellite symposia, webinars, and Science Simplified articles — with sponsors having no influence on content), and fundraising events (Fundraise Your Way, JustGiving-based community fundraisers). Distribution is direct-to-consumer via the website (theflf.org), email newsletters, social media (Facebook, X, Instagram, LinkedIn, YouTube), Zoom-delivered webinars, and presence at major haematology conferences including ASH and ICML. The organization is governed by a Board of Directors, operates from a single London office, and is not backed by private equity or venture capital.

Name

Follicular Lymphoma Foundation

Legal name

Follicular Lymphoma Foundation

Website

https://theflf.org

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

11–50 employees

Short description

The Follicular Lymphoma Foundation (FLF) is a UK-registered non-profit founded in 2019 that funds FL research and serves FL patients, caregivers, and clinicians globally through free educational resources, webinars, patient-involvement networks (FL Voices, Super Supporters), and purpose-built research programmes (CURE FL, FL Biomarker Discovery, PETReA Plus).

Ownership category

akta.pro rank

Product category

Nonprofit Cancer Patient Advocacy and Research

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

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

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN)

Keywords

• Follicular lymphoma research
• Cancer patient advocacy
• Medical research funding
• Patient education programs
• Healthcare charity services

Headquarters

HQ city

London

HQ country

United Kingdom

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Giving: FLF raises funds from individual donors through its website donation portal (stripe, PayPal, GoCardless for direct debits), one-time and recurring gift options, and a crypto for a cure program.
2. Corporate and Pharmaceutical Sponsorship: FLF receives sponsorship funding from pharmaceutical and biotech companies including AstraZeneca, Genmab, AbbVie, Ipsen, Incyte, BMS, BeiGene, Kite Gilead, BioInvent, and Regeneron. Sponsorship supports specific programs including the ASH 2025 Accelerating the Cure programme, the satellite symposium, patient surveys, webinar series, and science simplified articles. All sponsors have no influence on programme development or content.
3. Fundraising Events: FLF runs fundraising events and encourages supporters to fundraise through its Fundraise Your Way program, which includes challenge events and community fundraising activities. The organization uses third-party platforms such as JustGiving for event-based fundraising.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

The Follicular Lymphoma Foundation funds and coordinates medical research into follicular lymphoma and delivers free education, support, and community resources to FL patients and caregivers worldwide. Its offerings include a Support Hub with educational content and personal stories, expert-led webinars, the FL Voices patient involvement network, the Super Supporters advocacy program, and three research funding programs (CURE FL, FL Biomarker Discovery, PETReA Plus). It also conducts an annual Global Patient Survey generating real-world evidence that informs research priorities.

Product overview

The Follicular Lymphoma Foundation operates a patient-centered digital platform providing education, support, and community resources for people affected by follicular lymphoma. The core offerings include a comprehensive Support Hub with FAQs and personal stories, a webinar series featuring expert clinicians and patient advocates, and the FL Voices patient involvement network enabling contribution through surveys and focus groups. Research activities are central to the mission, encompassing the CURE FL Programs, FL Biomarker Discovery Program, and PETReA Plus observational study. The annual Global Patient Survey captures real-world patient experiences to inform research priorities and advocacy efforts.

Differentiator

Problem solved

Functional benefit

Brands

• FL Voices: A flexible patient involvement network designed to make it easier for people affected by follicular lymphoma to get involved in shaping the Foundation's work.
• Super Supporters
• Global Patient Survey

Products and services

• Patient Support Hub

Quantifiable outcome

• The FLF's 2025 Global Patient Survey reached 1,042 FL patients from 52 countries — a representative, large-scale patient dataset that is directly influencing research priorities and clinical discussions globally.
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eleven partnerships are on record, tiered core and minor.

• CCO (Clinical Care Options)coreStrategic or Co-development PartnerFLF partnered with CCO (a company specializing in medical professional education) to host a satellite symposium at ASH 2025. Over 100 clinicians attended the live session and 100s more attended virtually. CCO specializes in creating educational programming for healthcare professionals, and this partnership enabled FLF to present its 2025 Global Patient Survey findings and the latest evidence on emerging FL treatments (bispecific antibodies and CAR-T therapy) directly to a large clinical audience.
• NovartisminorOthersNovartis provided sponsorship funding for FLF's 2025 Global Patient Survey. All sponsors had no influence on, control of, or input into the development or performance of the survey.
• GenmabminorOthersGenmab provided sponsorship funding for FLF's 2025 Global Patient Survey. All sponsors had no influence on, control of, or input into the development or performance of the survey.
• AbbVieminorOthersAbbVie provided sponsorship funding for FLF's 2025 Global Patient Survey. All sponsors had no influence on, control of, or input into the development or performance of the survey.
• IncyteminorOthersIncyte provided sponsorship for FLF's ASH 2025 Accelerating the Cure programme, which enabled FLF to bring together ~15 FLF-funded researchers from across the globe at ASH 2025. Incyte also contributed to the satellite symposium educational grant.
• BMS (Bristol Myers Squibb)minorOthersBMS (Bristol Myers Squibb) provided sponsorship for FLF's ASH 2025 Accelerating the Cure programme, which enabled FLF to convene global FL researchers at ASH 2025.
• UseMyDataminorStrategic or Co-development PartnerUseMyData is an independent UK charity and patient advocacy group focused on the use of patient data in research. Chris Carrigan from UseMyData participated as a panelist in FLF's webinar 'Your Health Data: How it Powers Research', bringing a patient advocate perspective on health data ethics and safeguards.
• JustGivingminorChannel Partner/ Reseller/ DistributorJustGiving is referenced as a third-party platform through which FLF supporters can raise funds for the organization, as part of FLF's fundraising events programme.
• StripeminorOthersStripe is FLF's payment processing provider for one-off donations made by payment card and recurring donations. Stripe processes card transactions on FLF's behalf.
• GoCardlessminorOthersGoCardless is FLF's payment processing provider for UK direct debit donations, enabling recurring direct debit contributions.
• PayPalminorOthersPayPal is listed as a payment option for donors making one-off or recurring donations to FLF through the website donation portal.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Cancer Research UK: The UK's largest cancer research charity and overall funder of FL-relevant science. Comparable as a major research-funder with overlapping UK scientific and donor networks, but operates at much broader cancer scope.
• Macmillan Cancer Support: Major UK cancer charity providing information, support, and grants. Comparable in supporting cancer patients across the UK including FL, but a broad incumbent operating at massive scale beyond any single disease.
• Leukemia & Lymphoma Society (LLS): The largest US blood cancer nonprofit, covering leukemia, lymphoma, and myeloma. Comparable as a research-funder and patient-support organization operating in an overlapping space, but LLS is a broad blood cancer incumbent with materially larger scale than FLF.

Direct peers

• CLL Society: US-based patient-centric nonprofit dedicated to chronic lymphocytic leukemia. Closely comparable model: disease-specific, education-driven, research-funded, with strong virtual community and expert webinar programming.
• Lymphoma Research Foundation: Largest US-based nonprofit focused specifically on lymphoma, funding research and providing patient education and support. Directly comparable as a disease-specific lymphoma foundation; FLF competes with LRF for donor mindshare and research visibility, but LRF is significantly larger and US-centric.
• Blood Cancer UK: UK-based blood cancer charity funding research and supporting patients across leukaemia, lymphoma, and myeloma. Closely comparable as a UK-registered research-funder and patient-support charity, with overlapping UK donor pools and researcher networks.
• Myeloma UK: UK-based disease-specific charity for myeloma. Highly comparable as a UK-registered, research-funding and patient-support charity focused on a single haematological malignancy, sharing similar operating model and donor base overlap.
• CureSearch: US-based pediatric cancer research and patient support nonprofit. Comparable in mission and structure as a disease-area research funder with patient-engagement programs, though focused on children's cancer rather than FL specifically.
• Lymphoma Coalition: Global nonprofit network of lymphoma patient organizations. Comparable in mission and global scope as a lymphoma-focused umbrella that connects patient groups and produces cross-country surveys (similar in spirit to FLF's Global Patient Survey).

Others

• International Lymphoma Radiation Oncology Group (ILROG): International physician network focused on lymphoma radiation oncology guidelines and research. Comparable in that it works across the lymphoma research community, but as a clinician-led group rather than a patient-facing charity.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/cure_fl
• YouTubeyoutube.com/@follicularlymphomafoundation
• Facebookfacebook.com/FollicularLymphomaFoundation
• LinkedInlinkedin.com/company/follicular-lymphoma-foundation
• Instagraminstagram.com/FollicularLymphomaFoundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Follicular Lymphoma Foundation