Stichting Zeldzame Ziekten Fonds

What Stichting Zeldzame Ziekten Fonds does

Stichting Zeldzame Ziekten Fonds (ZZF) is a Dutch ANBI-registered nonprofit foundation established in 2005 with the dual mandate of funding medical research into rare diseases (approximately 70% of programme spending) and organizing peer-support days for affected patients and families (approximately 30%). Operating exclusively in the Netherlands with a lean team of 11 — comprising two part-time core staff and an unpaid supervisory board led by co-founder and chairman Charles Ruijgrok — ZZF has funded over 60 research projects and reports two named translational outcomes: a neonatal probiotic intervention that reduced necrotising enterocolitis incidence by 50% and a DNA diagnostic that shortened turnaround from three days to four hours.

The foundation's business model is community-driven philanthropy rather than commercial revenue: it generates income through individual donations, corporate sponsorship (including State of Art, Novus Leo, and Porsche Centrum Rotterdam), a peer-to-peer fundraising platform partnership with GoodShift, and institutional support from VriendenLoterij (Dutch Friends Lottery). It explicitly does not receive government funding. Notable research collaborations include work with the Dutch National Institute for Public Health and the Environment (RIVM) on expanding the newborn heel prick screening programme, and a recently initiated project using AI-powered 3D protein-structure prediction to develop exon-skipping therapy for Usher syndrome. Celebrity ambassadors Rafael van der Vaart, Estavana Polman, and Jan Lammers anchor flagship fundraising events such as the annual ZZF Rally.

In 2024, ZZF reported revenue of €1,632,350, up approximately 33% from €1,223,257 in 2023. Its competitive position rests on a 21-year operating track record, a multi-stakeholder ecosystem of patients, researchers, ambassadors and sponsors, and ANBI tax-deductible status that channels lottery and individual donor flows. The foundation's primary constraint is scale: a small permanent staff and event-dependent revenue mechanics limit throughput, while expansion is pursued horizontally through new venue partnerships (Efteling, Madurodam, Naturalis) and vertically through deeper integration with national screening policy.

Name

Stichting Zeldzame Ziekten Fonds

Legal name

Stichting Zeldzame Ziekten Fonds

Website

https://zzf.nl

Company type

Private

Founded year

2005

Operating status

Operating

Short description

Stichting Zeldzame Ziekten Fonds (ZZF) is a Dutch ANBI-registered nonprofit foundation, founded in 2005, that funds rare disease medical research (~70% of spending) and organizes peer-support events for patients and families (~30%). It operates solely in the Netherlands with 11 staff and reported €1.63M in 2024 revenue from donations, sponsorships, and event fundraising.

Ownership category

akta.pro rank

Product category

Charitable Foundation - Rare Disease Research Funding

NAICS

Voluntary Health Organizations (813212)

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

Maternal, Newborn, Child & Adolescent Health (MNCAH) NGOs (HLAJAKAG), Research & Science Grantmaking Foundations (BPAGAKAI)

Keywords

• Rare disease research funding
• Charitable foundation Netherlands
• Peer support community events
• Medical research grants
• Donation-driven nonprofit

Headquarters

HQ city

Den Haag

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: One-time and periodic donations from private individuals. ZZF operates as an ANBI (Algemeen Nut Beogende Instelling), making donations tax-deductible for Dutch donors. No product or service is sold.
2. Annual Revenue (2024): ZZF reported total revenue of €1,632,350 in 2024, up from €1,223,257 in 2023. As a nonprofit, all revenue is reinvested in mission activities. The organization receives no government funding.
3. Event Participation Fees and Fundraising: Revenue raised through event participation fees (e.g., Kids Rally donation tiers of €350–€1,000 per driver), rally entry fees, and peer-to-peer fundraising via the GoodShift platform. All proceeds go directly to research and peer-support activities.
4. Corporate Sponsorship and Partnerships: Sponsors such as State of Art (rally jackets), Novus Leo (rally route organization), and corporate donors (e.g., Fortes, Kerkhof, DVDW Advocaten, Fab 21, Arbo Advies) contribute financially or in-kind. These are treated as philanthropic contributions rather than commercial revenue.
5. Legacy Bequests and Testimonial Planning: ZZF accepts legacy bequests (nalatenschappen) and promotes testamentary giving. Bequests are a recurring revenue source highlighted as part of the 'Vrienden van ZZF' program and long-term donor strategy.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels10 records

Core offering

ZZF is a Dutch charitable foundation that funds and facilitates medical-scientific research into rare diseases and organizes peer-support contact days for affected children and families. It screens, reviews, and funds rare disease research projects selected by an independent Medical Advisory Board, and runs free recreational outings and connection events for families affected by rare diseases. Funding comes entirely from donations, event participation, and corporate sponsorship.

Product overview

Stichting Zeldzame Ziekten Fonds (ZZF) operates as a charitable foundation—not a traditional product company—focused on funding medical-scientific research into rare diseases and organizing peer support days for affected families. The organization offers several interconnected programs: ZZF-Onderzoeksprojecten provides funding and governance for rare disease research projects selected through rigorous medical review; ZZF-Lotgenotencontactdagen delivers recreational support events for families; ZZF-Rally's organizes fundraising events including the Jan Lammers ZZF Rally and Kids Rally; and various donation programs including Vrienden van ZZF (annual giving), testamentary giving, and periodic donations. The foundation operates entirely on donations without government funding, directing approximately 70% of resources to research and 30% to peer support activities.

Differentiator

Problem solved

Functional benefit

Products and services

• ZZF-Onderzoeksprojecten (Research Project Funding) Medical-scientific research funding for rare diseases in the Netherlands. ZZF screens, selects, and funds the most promising research projects through a rigorous selection process involving its Medical Advisory Board and Board of Directors. Researchers apply via the ZZF online application form and projects are reviewed for scientific quality before funding.
• ZZF-Lotgenotencontactdagen (Peer Support Contact Days) Free recreational and connection events where children with rare diseases and their families meet peers facing similar challenges. Events include theme park visits, cinema mornings, museum evenings, and multi-day nature park stays. Approximately 30% of ZZF resources are directed to these activities.
• ZZF-Rally's (Jan Lammers ZZF Rally and ZZF Kids Rally) Annual charity rally events that combine fundraising with community building. The Jan Lammers ZZF Rally features corporate and family teams in a navigation rally, while the Kids Rally provides children with rare diseases a dream drive experience. Drivers pay voluntary donation tiers (e.g., Kids Rally €350–€1,000 per driver).
• Vrienden van ZZF (Friends of ZZF) A structured giving program for donors providing annual contributions to support ZZF's research and family support activities. Includes anonymous giving options and direct contact with the foundation.
• ZZF in uw testament (Bequest Program) Planned giving program allowing donors to include ZZF in their wills or estates through erfstelling (inheritance designation) or legaat (specific bequest). Part of ZZF's long-term donor strategy.
• Periodieke Donatie (Periodic Donation) Recurring donation program enabling donors to make regular scheduled contributions supporting ZZF's research and peer-support mission.
• Kom in Actie voor ZZF (Take Action via GoodShift) Crowdfunding and action platform via GoodShift.nl allowing supporters to create personal fundraising campaigns, challenges, and events. 100% of donations flow to ZZF's mission.

Quantifiable outcome

• More than 60 medical research projects (co-)enabled since founding in 2005
• +4 more outcomes

Named customers9 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

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

• GoodShift.nlcoreGTM or Marketing PartnerZZF is connected to GoodShift.nl as its primary peer-to-peer fundraising platform. GoodShift enables individuals to create personal fundraising pages and challenges for ZZF. Donations through the platform go 100% to ZZF's mission. ZZF actively promotes the partnership on its website and encourages supporters to start campaigns via the GoodShift app.
• Novus LeocoreStrategic or Co-development PartnerNovus Leo is the professional navigation route designer for the Jan Lammers ZZF Rally. They design the challenging rally routes across the Netherlands for the three competitive classes (Comfort, Tour, Sport). The rally is a key annual fundraising event for ZZF.
• State of ArtflagshipGTM or Marketing PartnerState of Art is the exclusive sponsor of the collector's item rally jackets distributed to Jan Lammers ZZF Rally participants. The jackets are highlighted as a key participant perk and collector's item, reinforcing State of Art's brand association with the ZZF Rally brand.
• Porsche Centrum RotterdamminorGTM or Marketing PartnerPorsche Centrum Rotterdam hosts the finish and auction of the Jan Lammers ZZF Rally. The venue provides the high-end backdrop for the closing event, veiling, and prize ceremony.
• Rijksinstituut voor Volksgezondheid en Milieu (RIVM)coreStrategic or Co-development PartnerRIVM is a collaborative partner in ZZF-funded research on adding genetic tests to the Dutch heel prick (hielprik) screening program for severe congenital immune deficiencies. RIVM manages the existing hielprikscreeningsprogramma and is essential to implementing new genetic tests.
• Stichting voor Afweerstoornissen (SAS)coreStrategic or Co-development PartnerSAS (Patient Association for Immune Disorders) is a collaborative partner in ZZF-funded research led by LUMC on expanding heel prick screening to include severe congenital immune deficiencies. SAS contributes patient perspective and advocacy to the research project.
• De EftelingcoreGTM or Marketing PartnerDe Efteling serves as both lunch venue for the Jan Lammers ZZF Rally and as a ZZF Lotgenotendag event location (day trip on 17 October 2026 and a Christmas edition on 19 December 2026). The theme park provides complimentary or subsidized access for ZZF families.
• MadurodamflagshipGTM or Marketing PartnerMadurodam is the start and finish venue for the ZZF Kids Rally (for children with rare diseases as VIP passengers) and also hosts a 'Kompanen Netwerken met ZZF naar Madurodam by Night' event. It provides a magical experience for affected families.
• DuinrellminorGTM or Marketing PartnerDuinrell (Wassenaar) is a venue for ZZF Lotgenotendagen events, including a Christmas edition on 12 December 2026. Provides attractions and entertainment for children with rare diseases and their families.
• Center Parcs Parc SandurminorGTM or Marketing PartnerCenter Parcs Parc Sandur hosts a ZZF Lotgenotencontactdagen midweek event (14–18 September 2026), providing accommodation and facilities for families affected by rare diseases.
• Naturalis Biodiversity CenterminorGTM or Marketing PartnerNaturalis (Leiden) hosted an exclusive evening opening for ZZF families, providing a unique educational and social experience outside regular hours.
• WestlandTheater De NaaldminorGTM or Marketing PartnerWestlandTheater De Naald (Naaldwijk) hosts a cinema morning (Bioscoopochtend) for ZZF families, scheduled for 30 November 2026.
• Ouwehands DierenparkminorGTM or Marketing PartnerOuwehands Dierenpark (Rhenen) hosted an adventurous day for ZZF families as part of the Lotgenotendagen program.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Prinses Beatrix Spierfonds: Dutch charitable foundation funding research into neuromuscular diseases (many of which are rare) and supporting affected families. Closest structural peer to ZZF — donation-funded, ANBI-status, research-grantmaking model with peer-support programming.
• Stichting ALS Nederland: Dutch foundation dedicated to funding research into ALS, a rare and severe neuromuscular disease, and supporting patients/families. Operates the same donation-funded, ANBI-registered, research-grantmaking model as ZZF.
• Spierziekten Nederland: National Dutch patient association for people with neuromuscular diseases, many of which are rare. Combines patient advocacy, peer support, and research funding — overlapping significantly with ZZF's dual research/peer-support mission.
• Stichting Hartekind: Dutch charity funding research into congenital heart defects in children and supporting affected families. Highly comparable mission to ZZF: pediatric rare disease, research funding plus family peer support, donation-funded, ANBI status.
• Make-A-Wish Nederland: Dutch affiliate of Make-A-Wish International granting wishes to children with critical illnesses, many of which are rare diseases. Comparable peer-support programming for sick children, donation-funded, no government support.
• Nierstichting: Dutch kidney foundation funding research into kidney diseases (many rare/genetic forms) and supporting patients. Donation-funded, ANBI-status, research-grantmaking model with strong peer-support programming — directly comparable to ZZF.

Broad incumbents

• KWF Kankerbestrijding: Dutch national cancer research charity. Much larger in scale, but follows the same donation-funded research-grantmaking model and funds rare-cancer sub-types. Useful as a benchmark for how Dutch health charities scale donor acquisition.
• ReumaNederland: Dutch foundation funding rheumatism research and supporting patients. Operates under the same ANBI donation-funded research model as ZZF, with a broader disease scope.
• EURORDIS - Rare Diseases Europe: European umbrella organization for rare disease patient associations. Operates at a broader geographic scope than ZZF and represents the international rare-disease advocacy and research-funding ecosystem ZZF participates in.
• NORD (National Organization for Rare Disorders): US-based umbrella organization for rare diseases. Comparable mission of advancing rare-disease research, policy, and patient support at greater scale; useful proxy for international philanthropic best-practice benchmarks.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/zeldameziekten
• YouTubeyoutube.com/@zeldzameziektenfonds
• Facebookfacebook.com/zeldzameziekten
• LinkedInlinkedin.com/company/stichting-zeldzame-ziekten-fonds-zzf
• Instagraminstagram.com/stichting_zzf

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles10 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Stichting Zeldzame Ziekten Fonds