Stichting Gilles de la Tourette

What Stichting Gilles de la Tourette does

Stichting Gilles de la Tourette is a Dutch non-profit foundation (Stichting) founded in 1982 and headquartered in Haarlem, the Netherlands, that serves as the primary patient and advocacy organization for people with Gilles de la Tourette syndrome in the Netherlands. It holds ANBI (Algemeen Nut Beogende Instelling) status and CBF erkenning, the two principal Dutch trust marks for charitable fundraising organizations, and operates with a staff of 11-50 supported by regional volunteers across at least eight Dutch provinces.

The foundation's core offerings are community- and information-based rather than technology products. Services include a comprehensive Dutch-language information portal (tourette.nl) covering diagnosis, treatment, school, work, and stigma; peer support through a Telefoonlijn, Facebook groups, WhatsApp groups, online meetings, and regional contact evenings; national in-person events headlined by the annual Landelijke Contactdag (which drew ~262 attendees in 2025 and reached a ~300-attendee cap in 2026); age-segmented programs for children (6-12), teens (12-17), young adults (18+), and summer camps; plus targeted resources such as the Tourette Magazine publication, the Tourettepas identification card, and a Tourette Netwerk directory of healthcare providers. The foundation also promotes scientific research, including promotion of international studies like Tic Clips (with the University of Minnesota) and Tackle Your Tics, and maintains an advisory board (Adviesraad) of clinicians and researchers.

The revenue model is donation- and membership-driven with a suggested minimum of €25 per year; all programs and events are free for participants. Distribution relies on regional volunteer coordinators, the website, newsletters, social media, and partnerships (e.g., Pathé Bioscopen for film screenings, ADF Stichting for walking events, Trimbos Instituut for mental health advocacy). The foundation does not sell commercial technology products and has no disclosed revenue figures.

Name

Stichting Gilles de la Tourette

Legal name

Stichting Gilles de la Tourette

Website

https://tourette.nl

Company type

Private

Founded year

1982

Operating status

Operating

Headcount range

11–50 employees

Short description

Stichting Gilles de la Tourette is a Dutch non-profit foundation, founded in 1982 and based in Haarlem, that provides information, peer support, and advocacy for people with Tourette syndrome and their families in the Netherlands through regional groups, national events, and digital resources.

Ownership category

akta.pro rank

Headquarters

HQ city

Haarlem

HQ country

Netherlands

HQ region

Europe

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Membership: The foundation operates as a charitable organization with ANBI (public benefit institution) status and CBF recognition, relying on donations from members and supporters. Minimum annual donation mentioned is €25.
2. Tourette Magazine: Publication sent to donors/members, likely funded through membership fees and donations.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

Stichting Gilles de la Tourette is a Dutch non-profit foundation that provides information, peer support, and advocacy for individuals with Tourette syndrome and their families. It offers a Tourette Magazine publication, a Tourettepas identification card, national and regional contact days, youth camps, and guidance services. The foundation also raises awareness and represents the Tourette community in the Netherlands through accredited charitable activities.

Product overview

Stichting Gilles de la Tourette is a Dutch non-profit foundation (ANBI/CBF recognized) that provides information, peer support, and advocacy for people with Tourette syndrome and their families. The organization offers educational resources, regional contact meetings, Tourette Magazine publication, Tourettepas identification cards, summer camps for children/teens, webinars, and organizes awareness campaigns. They do not offer commercial technology products.

Differentiator

Problem solved

Functional benefit

Quantifiable outcome

• Average years from first symptoms to diagnosis: average duration

Named customers3 records

Segments4 records

Ideal customer profiles3 records

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core and minor.

• Minnesota Tic and Compulsivity Lab, University of MinnesotacoreStrategic or Co-development Partner · 16 November 2025Collaboration on Tic Clips research project, investigating whether video can be used to measure tics. The foundation promotes participation in this international research study among Dutch members.
• Trimbos InstituutminorStrategic or Co-development PartnerResearch collaboration referenced in MIND petition about mental health. The Trimbos figure on mental health statistics (half of all adults experience a psychological disorder in their lifetime).
• ADF StichtingminorStrategic or Co-development PartnerJoint organization of walking events in Maximapark Utrecht for people with Tourette and related conditions.
• Pathé BioscopenminorGTM or Marketing PartnerPartnership for exclusive screenings of the film I Swear at Pathé locations across the Netherlands (Amsterdam Arena, Breda, Delft, Utrecht Leidsche Rijn, Zwolle).

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Others

• Patiëntenfederatie Nederland (Dutch Patients Federation): Umbrella Dutch patient-advocacy organization. Adjacent/ecosystem peer; not a direct competitor but a collaborator and potential channel partner for collective Dutch patient advocacy.
• European Federation of Neurological Associations (EFNA): Pan-European federation of neurology patient organizations. Indirect peer — acts as an enabling/advocacy umbrella with which condition-specific Dutch organizations like this one engage for policy/research access.

Direct peers

• Tourette Association of America: Largest US Tourette patient advocacy nonprofit. Directly comparable mission: peer support, awareness, healthcare provider network, research promotion, and regional chapters serving a defined national patient population.
• Tourette Syndrome Foundation of Canada: Canadian Tourette patient organization with analogous programs (chapters, research grants, conferences, resources). Same single-condition advocacy model in a different national geography.
• European Tourette Syndrome Association: Umbrella European advocacy network. Complementary peer where the Dutch foundation is a member/national affiliate; comparable mission around cross-border awareness and research.
• Tourettes Action (UK): UK Tourette charity providing information, support, and advocacy. Closest European peer in terms of programs (helpline, regional groups, magazine, awareness events) and donor-funded nonprofit model.
• Spierziekten Nederland (Dutch Neuromuscular Diseases Association): Dutch condition-specific patient organization with analogous structures: ANBI status, member-supported model, information resources, regional contact, magazine publication, awareness campaigns. Strong structural template peer.

Broad incumbents

• Hersenstichting (Dutch Brain Foundation): Larger Dutch neuroscience charity with much broader scope (all brain conditions). Tangential competitor for donor attention and government grants, but not focused on Tourette specifically.

Emerging players

• ANBI-status health charity peers (e.g., Nederlandse CVA Vereniging): Other ANBI/CBF-recognized Dutch condition-specific patient nonprofits. Comparable operational model (donor-funded, regional events, magazine, helpline) for a different neurological condition.
• Balans (Dutch parent & child organization): Dutch nonprofit focused on behavioral/learning differences in children (ADHD, DCD, dyslexie, autism). Overlaps with parent-segment Tourette support use cases.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/watch?v=vB7yog2UTfA
• Xx.com/StichtingGTS
• Facebookfacebook.com/StichtingGillesDeLaTourette
• LinkedInlinkedin.com/company/stichting-gilles-de-la-tourette

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Stichting Gilles de la Tourette