What Stichting Steun 22q11 does

Stichting Steun 22Q11 is a Dutch non-profit patient advocacy foundation founded in 2014 and headquartered in Uden, Netherlands, serving families, healthcare professionals, and researchers affected by the 22q11 deletion/duplication syndrome — a rare genetic condition occurring in approximately 1 in 2,000 children and associated with 195 possible clinical manifestations. The foundation operates as the central Dutch hub connecting the 22q11 community, providing peer support, reliable Dutch-language information, and practical tools including the Inspiratiebox (a curated support package containing the Superaap Sammie children's book, Olivia Olifant plush, parent information, and the magazine), the 'Samen leggen we de puzzel' puzzle-based consultation kit developed with Ann Swillen, and the Care4Parents online parenting training (9 sessions) developed by Sasja Duijff. It also publishes the annual magazine 'Overleven met 22Q11' and the information book 'Want onbekend maakt onbegrepen', and operates the Sport project in partnership with over 40 Dutch sports clubs since 2019.

The foundation is governed by a board led by Director Kim van Bekkum (with 24+ years of experience as an expert by experience) and Chair Marc van Hout, supported by a Multidisciplinary Advisory Board including pediatricians, GZ-psychologists, and academic researchers. It holds ANBI status (Algemeen Nut Beogende Instelling) and has been CBF Erkend since December 2018, indicating regulatory recognition of its governance and transparency. Revenue is generated through a diversified mix of channels: individual donations (suggested amounts of €5, €7.50, €10 or custom, monthly or one-time via direct debit), parent association membership dues (€35/year via auto-debit or €40/year via invoice), the Club van 100 corporate sponsorship program (named sponsors include John van Zweden, De Verzuimmakelaar, CLAP, Prentenbakker, Cinergie), merchandise sales (Superaap Sammie plush €10, Olivia Olifant €17.50, branded apparel, Dopper bottles), publication sales, event fundraising (the Brabantse Wal Marathon 2026 raised €33,000 with 120 participants), the Lot of Happiness lottery partnership (announced February 2026), and a VWS subsidy for the Impact & Bereik professionalization project (2024-2025).

The foundation funds and facilitates scientific research through strategic partnerships with UMC Utrecht / Wilhelmina Kinderziekenhuis (hosting the integrated Castor database for 22q11DS clinical data), Maastricht UMC+ (22q11 clinic for adults), 's Heeren Loo (EMDR research for trauma-related complaints), and the European Reference Network CRANIO (international guideline revision, 2023). It participates in international collaborations including the European 22q11 Foundation, the International 22q11 Society, and the European MOOC on brain-related manifestations of 22q11DS (subtitled in 17 European languages). Geographic footprint is primarily domestic (Netherlands) with light cross-border activity into Belgium via product shipping; international engagement is awareness- and guideline-oriented rather than service-delivery.

Name

Stichting Steun 22q11

Legal name

Stichting Steun 22Q11

Website

https://steun22q11.nl

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

Stichting Steun 22Q11 is a Dutch non-profit foundation (founded 2014, Uden, Netherlands) that supports families, healthcare professionals, and researchers affected by 22q11 deletion/duplication syndrome through peer support, Dutch-language information products, awareness campaigns, and research funding partnerships with Dutch academic medical centers.

Ownership category

akta.pro rank

Product category

Patient Advocacy / Rare Disease Support

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Human Rights Organizations (813311)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disability Rights & Accessibility Advocacy (BPAGAFAF)

Keywords

• Rare disease support
• Patient advocacy foundation
• Peer support services
• Genetic syndrome awareness
• Community healthcare

Headquarters

HQ city

Uden

HQ country

Netherlands

HQ region

Europe

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. Membership dues (oudervereniging): Annual membership fees for the parent association (oudervereniging). Members gain access to reliable information, discounts on events, and a community of peers and involved professionals. Membership also provides free first copy of the annual magazine and eligibility for special programs.
2. Donations: One-time and recurring donations from private individuals and corporate donors. Monthly or one-time amounts via direct debit. This is the primary funding source enabling the foundation's mission of awareness, recognition, and support for 22q11 families.
3. Club van 100 corporate sponsorship: Corporate sponsor program targeting businesses that want to make impact as sponsors of the foundation. Sponsors receive recognition, logo placement, and involvement in foundation activities.
4. Sales of publications: Sale of the annual magazine 'Overleven met 22Q11' (€5.50 per copy) and the information book 'Want onbekend maakt onbegrepen' (€20 per copy). Older magazine editions also available.
5. Merchandise sales: Sale of branded merchandise including Superaap Sammie plush toy (€10), Olivia Olifant plush (€17.50), the Sammie book (€22), big shopper bag (€5), saddle cover (€6), Dopper water bottle (€14.50), sweater (€27.50), and sports shirt (€25).
6. Lot of Happiness partnership: Charity lottery partnership with Lot of Happiness (win-win lottery). Approximately 50% of participation funds go directly to the charity of the participant's choice, including Stichting Steun 22Q11. This provides a structural, low-threshold revenue stream.
7. Event fundraising: Funds raised through events such as the Brabantse Wal Marathon, where participants raise money and the foundation receives proceeds. The 2026 marathon raised €33,000. Also includes Ferrari Club Netherlands drives and other fundraising events.
8. Testamentary bequests: Individuals can include Stichting Steun 22Q11 in their will as either a co-heir (erfstelling) or a fixed amount/good (legaat). As an ANBI, the foundation does not pay tax on bequests, maximizing the impact of the bequest.

Pricing tiers

Go-to-market motion4 records

Distribution channels6 records

Marketing channels11 records

Core offering

Stichting Steun 22Q11 is a Dutch non-profit foundation that provides information, peer support, community events, and research support for families affected by the 22q11 deletion syndrome. It runs a parent association (oudervereniging), produces Dutch-language publications and an Inspiration Box for newly diagnosed families, sells branded merchandise, and organizes fundraising and awareness events such as the Brabantse Wal Marathon and 22Q at the Zoo.

Product overview

Stichting Steun 22Q11 is a non-profit patient organization offering a portfolio of informational, peer support, and awareness products and services for the 22q11 deletion syndrome community. The core offering includes the annual magazine 'Overleven met 22Q11' and the information book 'Want onbekend maakt onbegrepen', which provide practical information and personal stories. The organization distributes the Inspiratiebox—a curated support package with children's books, plush toys, and parent materials—and sells branded merchandise including Superaap Sammie and Knuffelolifant Olivia plush toys. Additional services include peer support events (22Q at the Zoo, family days, study days), the Sportproject awareness campaign, and the Club van 100 sponsorship program. All offerings aim to provide recognition, connection, and practical support for families affected by 22q11 syndrome.

Differentiator

Problem solved

Functional benefit

Products and services

• Annual magazine 'Overleven met 22Q11' Annual Dutch-language magazine that gives voice and face to life with 22q11 syndrome through personal stories, practical articles, and inspiring interviews. Priced at €5.50 per copy excluding shipping (free for new parent-association members).
• Information book 'Want onbekend maakt onbegrepen' Comprehensive Dutch-language information book explaining 22q11 syndrome, its characteristics, challenges, expert insights, and experiential family narratives. Priced at €20 per copy including shipping within the Netherlands.
• Inspiratiebox (Inspiration Box) Curated support package for newly diagnosed families containing the Superaap Sammie children's book, an Olivia Olifant plush toy, the parent information book, a magazine, and various inspiring materials to make the syndrome discussable and help families process feelings.
• Merchandise Collection (Superaap Sammie plush, Olivia Olifant plush, Sammie book, sweaters, sports shirts, Dopper, bags) Branded merchandise collection including Superaap Sammie plush (€10), Olivia Olifant plush (€17.50), the Sammie book (€22), big shopper bag (€5), saddle cover (€6), Dopper water bottle (€14.50), sweater with 22Q11 logo (€27.50), and 22Q11 sports shirt (€25).
• Care4Parents online parenting training Online parenting training consisting of 9 components (intake interview plus 8 online sessions) developed by Sasja Duijff of Care4Minds, aimed at parents of children with 22q11. Combines theory, psycho-education, and practical exercises on topics such as handling repeated questions, behavior differences at home vs. school, calm communication in stressful situations, and setting boundaries.
• Parent Association (Oudervereniging) Annual Membership Annual membership of the Stichting Steun 22Q11 parent association (oudervereniging). Priced at €35/year via automatic debit or €40/year via manual invoice. Provides access to reliable Dutch-language information, event discounts, the annual magazine, peer support networks, and special programs.
• Sportproject 'Omdat sporten niet vanzelfsprekend is' Awareness campaign promoting inclusion and accessibility in sports for people with 22q11 syndrome, in collaboration with over 40 Dutch sports clubs (since 2019). Combines visibility materials (digital ads, boards, banners, flags, posters, clothing) with awareness messaging for club members and visitors.

Quantifiable outcome

• €33,000 raised at the Brabantse Wal Marathon 2026 with 120 participants
• +3 more outcomes

Named customers9 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature5 records

Partnerships

Twelve partnerships are on record, tiered key, core and minor.

• Lot of HappinesskeyGTM or Marketing Partner · 1 February 2026Lot of Happiness is a win-win charity lottery. Approximately 50% of participation funds go directly to the participant's chosen charity, including Stichting Steun 22Q11. Together with its participants, Lot of Happiness has contributed over €45 million to affiliated charities. This partnership provides a structural, low-threshold revenue stream for the foundation.
• Care4Minds / Sasja DuijffcoreStrategic or Co-development PartnerCare4Minds, led by Sasja Duijff (GZ-psychologist, IMH specialist, mindfulness trainer), collaborated with the foundation on the 'Samen leggen we de puzzel' project. Sasja Duijff also developed and delivers the Care4Parents online parenting training (9 sessions) for parents of children with 22q11, combining theory, psycho-education, and practical exercises. Sasja Duijff is also a member of the foundation's Multidisciplinary Advisory Board.
• Ferrari Club NederlandkeyGTM or Marketing PartnerFerrari Club Nederland organized a special 'Doe een Plezier Rit' (Do a Pleasure Drive) event on 12 September 2026 in Eindhoven, exclusively for Stichting Steun 22Q11. Children and (young) adults with 22q11 (from age 7) and one caregiver each got to ride in a real Ferrari. The event was fully funded and organized by Ferrari Club Nederland, at no cost to participants.
• 's Heeren LoocoreStrategic or Co-development Partner's Heeren Loo, a care provider for people with intellectual disabilities, is the primary partner for the EMDR research project on trauma-related complaints in adults with 22q11DS. The research is conducted at various 's Heeren Loo locations and the 22q11 clinic. The organization also provides referrals of patients to the foundation's programs.
• Maastricht UMC+ (MUMC+)coreStrategic or Co-development PartnerAcademic Medical Center Maastricht is a key partner in both the EMDR research project (for adults with 22q11DS) and the 22q11 clinic at MUMC+. It provides clinical expertise, research infrastructure, and patient referrals for the foundation's programs.
• UMC Utrecht / Wilhelmina Kinderziekenhuis (WKZ)coreStrategic or Co-development PartnerUMC Utrecht and WKZ are key partners for the RNA research project on phenotypic diversity in 22q11DS (2020-2025), hosting the integrated database in Castor, the 22q11 clinic where Inspiration Boxes are distributed, and collaborating on psycho-education and educational materials. Dr. Michiel Houben (MBA) is the principal investigator.
• European 22q11 Foundation / International 22q11 SocietykeyStrategic or Co-development PartnerInternational umbrella organizations for 22q11 patient associations. The foundation collaborates with them on the European MOOC on brain-related manifestations of 22q11DS (with subtitles in 17 European languages) and connects its Superaap Sammie children's book with international characters (Olivia Olifant from America, Max de Beer from England).
• ERN CRANIO (European Reference Network for craniofacial anomalies)minorStrategic or Co-development PartnerThe European Reference Network for craniofacial anomalies includes a working group on 22q11. The foundation's team contributed to the revision of international 22q11DS guidelines (published 2023) and discusses how to translate and disseminate these guidelines to patients, families, and broader healthcare professionals.
• Ann SwillenkeyStrategic or Co-development PartnerAnn Swillen developed the 'Samen leggen we de puzzel' information and activity kit for children and families with 22q11, consisting of colorful puzzle pieces for consultations and a family book. This kit is a core component of the foundation's support offering.
• Intersport UdenminorGTM or Marketing PartnerIntersport Uden collaborates with the foundation on the Sport project, producing branded sportswear (outfits with the foundation's logo) for sale to supporters, free of charge for printing and shipping.
• Indian Maharadja (sports brand)minorGTM or Marketing PartnerIndian Maharadja collaborates with the foundation on the Sport project, producing branded sportswear for the foundation's logo-free of charge for printing and shipping.
• Ziezon (network for inclusive education)minorGTM or Marketing PartnerZiezon is a network for inclusive education that distributes the foundation's brochure 'A pupil with 22q11 deletion syndrome – information and advice for teachers' (developed with the GZ psychologist and WKZ education consultant) both in print and digitally via www.ziezon.nl/deletiesyndroom/.

Scale indicators9 records

Recent moves9 records

Expansion highlights6 records

Regional players

• Stichting Spieren voor Spieren: Dutch foundation funding research and supporting families affected by childhood muscle diseases. Highly comparable in business model (donations, events, research funding, family events, magazine) and Dutch donor market positioning.
• Stichting Hartekind: Dutch foundation funding pediatric cardiac research; relevant peer because congenital heart defects are among the 195 conditions linked to 22q11 syndrome. Comparable in Dutch rare pediatric disease fundraising, event-driven revenue, and healthcare partnerships.

Others

• Stichting Hulphond: Dutch foundation that trains assistance dogs for people with disabilities or chronic conditions; named as a referral partner of Stichting Steun 22Q11. Adjacent in disability-focused services and donor base, though not a direct competitor.
• Ziezon: Dutch network for inclusive education that distributes Stichting Steun 22Q11's teacher brochure. Adjacent in mission (support for children with disabilities in schools) and Dutch GTM, but focused on policy/resources rather than fundraising.
• Care4Minds: Dutch psychology practice whose principal (Sasja Duijff) co-developed and delivers Stichting Steun 22Q11's Care4Parents training. Adjacent service provider rather than competitor, but a comparable operator in Dutch child psychology and parental support.

Direct peers

• Stichting Downsyndroom: Dutch patient advocacy foundation for Down syndrome families; 22q11 is described in Stichting Steun 22Q11's own materials as the second most common congenital syndrome after Down syndrome. Closely comparable in mission, peer-support model, magazine/publications offering, and Dutch GTM.
• International 22q11.2 Foundation: U.S.-based umbrella organization for 22q11.2 deletion/duplication syndrome families, funding research and providing peer support. Directly comparable in mission, content library, and research advocacy to Stichting Steun 22Q11.
• European 22q11 Foundation: European-level 22q11 patient organization with which Stichting Steun 22Q11 collaborates on the European MOOC and international content. Directly comparable as a peer 22q11 advocacy organization at a different geographic tier.

Broad incumbents

• Patiëntenfederatie Nederland: National Dutch federation representing patient organizations and individual patients across all conditions. Comparable as a Dutch patient-advocacy umbrella but operates at a much larger scale and broader mandate than Stichting Steun 22Q11.
• VSOP (Vereniging Samenwerkende Ouder- en Patiëntenorganisaties): Dutch umbrella for ~90 rare and genetic disease patient organizations, including 22q11. Comparable in rare-disease advocacy, policy engagement, and Dutch healthcare professional networking, but at a broader portfolio level.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@StichtingSteunQ
• Facebookfacebook.com/steun22q11
• Instagraminstagram.com/stichting_steu_22q11
• LinkedInlinkedin.com/company/stichting-steun-22q11

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 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 Stichting Steun 22q11