Down Syndrome Foundation

What Down Syndrome Foundation does

Stichting Downsyndroom (SDS) is a Dutch non-profit foundation founded in March 1988 and headquartered in Meppel, Netherlands, that delivers information, training, and peer-support services to families, professionals, and people with Down syndrome across the life course (pregnancy through adulthood). It is the only national Dutch organization dedicated exclusively to Down syndrome and serves an estimated population of ~13,000 people with Down syndrome in the Netherlands through a national office (1-10 employees) supported by a network of 25 regional volunteer parent groups ("kernen") and a scientific researcher (Dr. Gert de Graaf).

Its core products and proprietary assets are content-led rather than technology-led. The portfolio includes the Kleine Stapjes web-based developmental program for children aged 0-6, the Leespraat reading method and Rekenlijn mathematics method, the Leidraad Onderwijs education guideline, the Vademecum Downsyndroom medical reference, the quarterly Down+Up magazine, a webshop, and the Down Academy training center. Technology is used to distribute content (webshop at winkel.downsyndroom.nl, online training delivery) but there is no proprietary software platform, AI/ML system, or API surface. Distribution is multi-channel: direct-to-consumer webshop, self-serve online training registration, regional volunteer networks, and phone/email helpdesk.

SDS operates as an ANBI and CBF Erkend Goed Doel-certified charity. Revenue is generated through donations/membership (€45+/year for benefits), paid training courses (€40-€75 for parents, €90-€350 for professionals), webshop sales (brochures, books, merchandise), and bequests/legacies. Go-to-market is community-led, event-driven (notably World Down Syndrome Day on 21 March with ~500 personalized posters and flashmobs), and direct-to-consumer, with awareness raised through the website, Facebook, Instagram, and the Down+Up magazine.

Name

Down Syndrome Foundation

Legal name

Stichting Downsyndroom

Website

https://downsyndroom.nl

Company type

Private

Founded year

1988

Operating status

Operating

Headcount range

1–10 employees

Short description

Stichting Downsyndroom is a Dutch non-profit foundation that provides information, training, and peer support to the ~13,000 people with Down syndrome in the Netherlands and their families, schools, and healthcare providers across the full life course.

Ownership category

akta.pro rank

Product category

Disability Support Services

NAICS

Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disability Services & Assistive Solutions (Accessibility, Assistive Tech) (BPAGALAM)

Keywords

• Down syndrome support
• Disability nonprofit services
• Special education resources
• Early intervention programs
• Inclusive education training

Headquarters

HQ city

Meppel

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Membership: The foundation relies heavily on donations from supporters. Members who donate at least €45 per year receive the quarterly magazine Down+Up, 20% discount on webshop purchases, and 20% discount on Down Academy training courses. Periodic gifts can be set up through bank transfer authorization.
2. Training Courses (Down Academy): Online training programs for parents and professionals on various Down syndrome topics. Pricing varies by audience type (parents vs. professionals) and course content. All studiedays are offered online with interactive formats.
3. Webshop Sales: Sale of educational brochures, books, and merchandise including the Kleine Stapjes program, Vademecum, educational guides on aging and end-of-life, sibling books, and branded clothing items like the Phil sweater for World Down Syndrome Day.
4. Bequests and Legacies: The foundation accepts inheritances and legacies through testament. As an ANBI institution, no taxes are due on bequests. Options include specific bequests (legaat) or percentage-based inheritances (erfstelling).

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels7 records

Core offering

Stichting Downsyndroom is a Dutch non-profit foundation that supports people with Down syndrome and their families across the lifespan (pregnancy through adulthood). It sells educational brochures, books, and merchandise through a webshop; offers the Kleine Stapjes web-based early-intervention program; runs the Down Academy online training center for parents and professionals; publishes the Vademecum medical reference and the quarterly Down+Up magazine; and operates a national network of 25 regional volunteer parent groups (kernen) providing peer support and community activities.

Product overview

Stichting Downsyndroom operates primarily as an information and support organization rather than a traditional software product company. Its main offerings include a Webshop selling educational materials (brochures, books, Kleine Stapjes early intervention program), the Down Academy training center providing online courses for parents and professionals on Down syndrome education and behavior, and the Leidraad Onderwijs comprehensive educational guideline. Additional offerings include the Vademecum medical reference work, the quarterly Down+Up magazine, a helpdesk service, and regional community activities through volunteer-organized kern groups. The organization also runs annual World Down Syndrome Day awareness campaigns including poster creation services and flash mobs. The portfolio is unified around providing comprehensive support across the life cycle of people with Down syndrome.

Differentiator

Problem solved

Functional benefit

Brands

• Down Academy: Het trainingscentrum van de Stichting Downsyndroom, offering online studiedagen (training courses) for professionals and parents on Early Intervention, education, and behavior regarding Down syndrome.

Products and services

• Webshop

Quantifiable outcome

• 38 years of continuous operation providing support to Dutch Down syndrome community
• +2 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature5 records

Partnerships

Eight partnerships are on record, tiered minor, moderate and core.

• TYGO & vitominorGTM or Marketing Partner · 21 March 2026Collaborative merchandise partnership for World Down Syndrome Day. TYGO & vito produced limited edition sweaters designed by Phil, a person with Down syndrome. The full proceeds from sweater sales support the foundation's activities.
• Stichting Upside DownmoderateStrategic or Co-development Partner · 6 June 2023Joint awareness campaign '13,000 people with 13,000 differences' (#DITISDOWNSYNDROOM) working toward an inclusive world where all children and adults with Down syndrome belong naturally. Collaboration highlights diversity within the Down syndrome community.
• NuNotariaatminorChannel Partner/ Reseller/ DistributorOnline notary partnership for testament services. NuNotariaat offers online testament creation at a fixed low rate, specifically featuring Stichting Downsyndroom as a charitable beneficiary option for wills and bequests.
• Stichting PlonsminorStrategic or Co-development PartnerSailing organization partnership providing inclusive sailing experiences for people with disabilities. Offers sailing activities for SDS families with adapted boats, safety equipment, and trained volunteers.
• Massachusetts General Hospital / Harvard Medical SchoolcoreStrategic or Co-development PartnerResearch collaboration with Dr. Brian Skotko on prenatal screening and diagnosis experiences. Joint publication in American Journal of Medical Genetics Part A examining Dutch parental experiences with prenatal screening and diagnosis of Down syndrome.
• FLOOR jongerencoachingminorStrategic or Co-development PartnerCollaboration to develop programs helping young adults with Down syndrome find meaningful activities and independence. Joint workshop development for adults with Down syndrome aged 18-40.
• Stichting IJsselmonde-OostminorOthersContent partnership for sexuality education materials. Annette Mol (Coordinator Sexuality and Resilience) developed information booklets for teenagers and adults with Down syndrome about body, friendships, boundaries, and relationships.
• EDSA (European Down Syndrome Association)coreStrategic or Co-development PartnerEuropean umbrella organization for Down syndrome foundations. Created platform to connect families across Europe, particularly used for Ukrainian refugee support and international family exchanges.

Scale indicators4 records

Recent moves7 records

Expansion highlights5 records

Broad incumbents

• MEE Nederland: Large Dutch national organization providing general disability information, advice, and support to people with intellectual disabilities and their families. Comparable in Dutch disability-support market but broader in scope than SDS's Down syndrome specialization.
• Stichting Philadelphia Zorg: Major Dutch healthcare provider for people with intellectual disabilities, including those with Down syndrome. Operates residential care and daytime activities, overlapping with SDS's adult-support mission but as part of a much broader disability-care portfolio.

Direct peers

• Down Syndrome Australia: The national peak body for Down syndrome in Australia, providing information, advocacy, and community programs. Directly comparable national federation model serving a defined geographic population of people with Down syndrome.
• National Down Syndrome Congress (NDSC): US-based national Down syndrome organization focused on resources, conferences, and community programs. Comparable peer with similar mission of empowering individuals with Down syndrome and supporting families through information and training.
• Down's Syndrome Association (UK): The UK's national Down syndrome membership organization, providing information, training, and support across the lifespan. Directly comparable to SDS in mission, structure, and service mix including education guidance, training courses, and local volunteer networks.
• National Down Syndrome Society (NDSS): The largest US national organization dedicated to Down syndrome, offering education, advocacy, community programs, and resources. Directly comparable in its comprehensive lifespan approach, national awareness campaigns, and policy advocacy role.

Regional players

• Canadian Down Syndrome Society: National Canadian organization providing resources, advocacy, and community connections for people with Down syndrome. Operates a similar national federation model but in a different geographic market than SDS.

Others

• European Down Syndrome Association (EDSA): European umbrella organization connecting national Down syndrome foundations across Europe, including SDS as a partner. Acts as a coordinating body rather than a direct service provider, but directly relevant as an ecosystem participant and existing partner.
• Ieder(in): Dutch umbrella network of disability organizations representing the interests of people with chronic conditions or disabilities. Adjacent to SDS's policy and advocacy work but covering all disabilities rather than specializing in Down syndrome.
• Stichting Jarige Job: Dutch ANBI-certified charity focused on children living in poverty, providing birthday packages. Comparable as a Dutch non-profit charity organization operating in the same fundraising and volunteer-driven environment, though serving a different cause.

Market position

Strengths4 records

Weaknesses4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/StichtingDownsyndroom
• Instagraminstagram.com/stichting_downsyndroom
• LinkedInlinkedin.com/company/stichting-downsyndroom-sds-

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Down Syndrome Foundation