Nederlandse Cystic Fibrosis Stichting (NCFS)

What Nederlandse Cystic Fibrosis Stichting (NCFS) does

Nederlandse Cystic Fibrosis Stichting (NCFS) is a Dutch charitable foundation (stichting) founded in 1969 and headquartered in Baarn, Utrecht, operating as the official expertise center (expertisecentrum) for cystic fibrosis in the Netherlands. The foundation serves approximately 1,500 people living with CF in the country, along with their families, caregivers, and the broader CF healthcare community, by funding research, advocating for medication access (notably CFTR modulators such as Kaftrio), providing peer support and practical guidance on financial and insurance matters, and coordinating quality care standards through the Dutch CF Registry. Its core technical and operational assets are the Dutch CF Registry (Nederlandse CF Registratie), a 20-year longitudinal quality registry built on Castor EDC and officially recognised as a national kwaliteitsregistratie since May 2026, and the HIT CF 3.0 research program (2022-2026, over €6M), which anchors research funding across all Dutch CF centers.

The organisation employs 17 staff and is led by two collegial directors (Domenique Zomer, Director of Care & Research, and Patrick Berends, Operations Director) supported by a Raad van Toezicht and an Adviesraad Zorg with 17 members. NCFS derives revenue from a diversified mix of individual donations (one-time, periodic, and periodieke schenking with 5-year tax-deductible commitment), corporate partnerships (including the LoonGift payroll giving program via The Social Handshake), bequests and inheritances, lottery affiliate income (VriendenLoterij, Lot of Happiness), merchandise sales (plush sloths), and event-based fundraising anchored by the Dam tot Damloop and a network of befriended foundations (Run4AIR, Skate4AIR, Gravel4AIR). The foundation holds ANBI status and CBF Erkend certification, publishes the Adempauze quarterly magazine and a monthly newsletter, and operates a multi-channel presence across Facebook, LinkedIn, Instagram, YouTube, and Spotify.

Name

Nederlandse Cystic Fibrosis Stichting (NCFS)

Legal name

Nederlandse Cystic Fibrosis Stichting

Website

https://ncfs.nl

Company type

Private

Founded year

1969

Operating status

Operating

Headcount range

11–50 employees

Short description

Nederlandse Cystic Fibrosis Stichting (NCFS) is a Dutch non-profit foundation founded in 1969 that serves as the national expertise center for cystic fibrosis, funding research, advocating for medication access, and supporting roughly 1,500 people with CF in the Netherlands through the HIT CF 3.0 program and the Dutch CF Registry.

Ownership category

akta.pro rank

Product category

Patient Advocacy & Disease Research Foundation

NAICS

Health and Welfare Funds (52512)

akta.pro primary industry

Non-Communicable Disease Prevention & Chronic Disease Programs (BPAIAJAI)

Keywords

• Cystic fibrosis foundation
• Patient advocacy services
• Medical research funding
• Peer support community
• Charitable donations

Headquarters

HQ city

Baarn

HQ country

Netherlands

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Research Grants and Programme Funding, Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: One-time donations, periodic/monthly donations, and periodic giving agreements (periodieke schenking) where donors commit to minimum 5 years of fixed annual contributions with full tax deductibility.
2. Corporate Partnerships: Corporate donations, sponsorship arrangements, and LoonGift payroll giving program through The Social Handshake partnership. Companies can make tax-deductible gifts up to 50% of profits (max €100,000).
3. Bequests and Inheritance: NCFS can be named as beneficiary (erfgenaam) or receive a legacy (legaat) through wills. Received €90,000 inheritance from Henca Janssen-Kroonenberg. Testamentary giving is promoted through partnerships with NuTestament.
4. Merchandise and Retail: Sale of plush sloths (luiaards) through webshop (ncfssupport.nl) and via VVV Gift Card donations.
5. Lottery Partnerships: Partnership with Lot of Happiness (50% of stake goes to NCFS) and VriendenLoterij (40% of stake goes to NCFS). Sponsorkliks and 123inkt cartridge recycling also generate affiliate income.
6. Research Grants and Subsidies: HIT CF 3.0 research program requires over €6 million (2022-2026). Received €280,000 from Van der Lely Foundation for gene therapy research (spread over 3 years). Actively pursues grants and subsidies for CF research.

Pricing tiers

Go-to-market motion2 records

Distribution channels7 records

Marketing channels11 records

Core offering

NCFS is the Dutch cystic fibrosis expertise centre that funds and coordinates CF research (e.g., the €6M+ HIT CF 3.0 programme, 2022–2026), advocates for medication access such as Kaftrio reimbursement, operates the nationally recognized Dutch CF Registry for quality of care, and delivers peer support, coaching, and information resources for people with CF and their families. Fundraising is executed through individual donations, corporate partnerships, payroll giving, lottery affiliations, merchandise sales, and bequests.

Product overview

NCFS operates as a cystic fibrosis expertise centre and patient organisation offering a portfolio of patient-facing digital services and a core data platform. The primary product is the Dutch CF Registry (Nederlandse CF Registratie), a quality registration platform used to monitor CF care quality and support research across Dutch CF centres. NCFS also operates digital fundraising and donation infrastructure, including one-time and recurring donation portals (hosted on ncfs.givingpage.org), an online collection platform (ncfs.digicollect.nl), and an action/campaign website via Kentaa (nederlandse-cystic-fibrosis-stichting.kentaa.com). Supporting offerings include patient blogs, webinars, informational brochures, a patient magazine (Adempauze), and a webshop (ncfssupport.nl).

Differentiator

Problem solved

Functional benefit

Products and services

• Dutch CF Registry (Nederlandse CF Registratie) A national, GDPR-compliant quality data registry used by all Dutch CF centres to capture pseudonymised patient data, monitor care outcomes, and support CF clinical research. Officially recognised as a quality registration (kwaliteitsregistratie) since May 2026.
• NCFS Donation Programme (one-time and recurring) Programme through which individuals support NCFS via one-time donations, monthly/annual recurring donations (donateur), or a periodieke schenking (minimum 5-year annual commitment with full tax deductibility). Donations fund CF research, advocacy, and patient support.
• Bequest and Legacy Programme (Nalatenschappen) Estate- and will-based giving programme allowing supporters to name NCFS as heir (erfgenaam) or leave a legacy (legaat), promoted in partnership with NuTestament.
• NCFS Webshop (ncfssupport.nl) Own online storefront selling branded merchandise such as plush sloths (luiaards) to raise funds for NCFS.
• LoonGift Payroll Giving (via The Social Handshake) Corporate payroll giving programme, delivered with The Social Handshake, that lets employees donate pre-tax salary to NCFS and offers companies a CSR employee-engagement channel.
• Adempauze Magazine Quarterly magazine published by NCFS covering patient stories, research updates, and CF-related articles; available in print and digital form to subscribers and the CF community.
• CF Webinars (Webinars over CF) Educational webinar series on CF topics such as gene therapy, CFTR modulators, and treatment options, delivered to patients, families, and the broader CF community; replays available online.
• CF Patient Blogs Recurring personal-experience blog content written by five people living with CF, covering hospitalisations, family life, hobbies, and daily challenges; published on the NCFS website approximately every two weeks.

Quantifiable outcome

• HIT CF 3.0 research program funding requirement: over €6 million for 2022-2026
• +3 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles4 records

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Partnerships

Twelve partnerships are on record, tiered core and minor.

• Roué VerveercoreStrategic or Co-development Partner · 22 August 2022Cabaretier (comedian) who serves as unofficial NCFS ambassador. Planted a tree at Floriade 2022 for CF Awareness Day as part of the 'Wij geven Lucht' campaign. Was moved by meeting someone with CF and volunteers his time for NCFS events.
• The Social HandshakecoreGTM or Marketing PartnerNCFS partners with The Social Handshake for the LoonGift payroll giving service, allowing employees to donate directly from their salary with tax advantages. This enables employers to offer simple employee giving programs as part of corporate social responsibility.
• Lot of HappinessminorGTM or Marketing PartnerNCFS is an official partner of the Lot of Happiness lottery. Approximately 50% of lottery stakes go to supported charities including NCFS. Participants have chances to win monetary prizes and other rewards.
• VriendenLoterijminorGTM or Marketing PartnerNCFS is supported by the VriendenLoterij (formerly BankGiro Loterij). About 40% of player contributions go to supported charities. Club number 9940 identifies NCFS for player support.
• SponsorKliksminorGTM or Marketing PartnerAffiliate program where online purchases through SponsorKliks generate percentage donations to NCFS at no extra cost to consumers. Partners include food delivery and online retailers.
• 123inkt.nlminorGTM or Marketing PartnerPrinter cartridge recycling partnership where 123inkt.nl recycles empty cartridges and donates proceeds to NCFS.
• Run4AIRcoreStrategic or Co-development PartnerRun4AIR is a befriended foundation that organizes running events to raise funds for CF research. Runners participate in marathons and organized runs with proceeds going to NCFS. Annual start packages for Dam tot Damloop are coordinated.
• Stichting The Air Team CFcoreStrategic or Co-development PartnerBefriended foundation that funded €15,000 for the HIT CF 3.0 research project on intestinal cancer screening in CF patients, conducted by Dr. Chantal Hoge at MUMC+.
• Stichting TaaiminorStrategic or Co-development PartnerBefriended foundation dedicated to CF awareness and support. Collaborates with NCFS on events including CF Awareness Day activities.
• Skate4AIRminorStrategic or Co-development PartnerBefriended foundation organizing skating events to raise awareness and funds for CF. Part of the broader CF awareness movement.
• Gravel4AIRminorStrategic or Co-development PartnerBefriended foundation organizing gravel cycling events to raise funds for CF research and awareness.
• UMC Utrecht (HIT CF 3.0 consortium)coreStrategic or Co-development PartnerUMC Utrecht leads the HIT CF 3.0 research program for NCFS. Professor Jeffrey Beekman directs gene therapy research. The consortium includes CF centers in Utrecht, Rotterdam, Groningen, Nijmegen, and Maastricht, with international collaboration in the US, England, France, and Italy.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• KWF Dutch Cancer Society: The largest health charity in the Netherlands, focused on cancer research and support. Comparable as a Dutch fundraising and research-grant-making organization with similar donor-channel infrastructure, but vastly larger and operating at national incumbent scale.

Direct peers

• Cystic Fibrosis Trust (UK): The UK national CF patient organization; directly comparable to NCFS in scope (research funding, patient support, advocacy, registry) and structure, with analogous population scale (~10,000 CF patients in the UK vs ~1,500 in NL).
• Cystic Fibrosis Foundation (US): The largest CF-focused patient advocacy and research-funding organization globally; directly comparable in mission (research funding, care quality, advocacy), but operates at much larger scale in the US market with a venture philanthropy model.
• Cystic Fibrosis Canada: The Canadian national CF patient organization; directly comparable in mandate including research funding, patient support, advocacy, and registry operations, with a similar federated model across regional chapters.
• Mukoviszidose e.V. (German CF Association): The German national CF patient organization; directly comparable as a national CF foundation operating research funding, patient support, and a quality registry across multiple CF centers in Germany.
• Association Grégory Lemarchal: The French CF patient advocacy organization; comparable in mission focus (research funding, awareness, family support) but smaller in scale; French CF community's equivalent of NCFS.

Regional players

• Longfonds (Lung Foundation Netherlands): Major Dutch respiratory disease foundation serving COPD, asthma, and other lung conditions. Comparable as a Dutch health charity competing for the same donor and corporate partnership pool, but with a broader disease mandate than NCFS's CF-specific focus.
• Spierziekten Nederland: Dutch neuromuscular disease patient organization covering ~600 rare neuromuscular conditions. Comparable as a Dutch rare-disease patient advocacy foundation with similar advocacy, information, and peer-support functions, though focused on a different disease cluster.
• Prinses Beatrix Spierfonds: Dutch foundation funding neuromuscular disease research. Comparable as a Dutch disease-specific research-funding foundation with similar ANBI and CBF credentials, donor-base dynamics, and research-grant-making model.

Emerging players

• European Cystic Fibrosis Society (ECFS): Pan-European professional society focused on CF research, care standards, and registry coordination (ECFSPR). Comparable as a multi-country CF data and research infrastructure peer, though a professional society rather than a patient advocacy organization.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/NedCFStichting
• Facebookfacebook.com/NederlandseCysticFibrosisStichting
• LinkedInlinkedin.com/company/nederlandse-cystic-fibrosis-stichting
• Instagraminstagram.com/cfstichting

Compliance3 records

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 Nederlandse Cystic Fibrosis Stichting (NCFS)