Stichting Ushersyndroom
Stichting Ushersyndroom is a Dutch volunteer-operated non-profit foundation that funds scientific research into Usher syndrome (progressive genetic deafblindness) and provides information and peer support to affected patients and families in the Netherlands and internationally.
- Company typePrivate
- Founded-
- HeadquartersAmsterdam, Netherlands
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Stichting Ushersyndroom does
Stichting Ushersyndroom is a Dutch non-profit foundation established in 2012 and headquartered in Arnhem, with its Trade Register registration in Amsterdam (KvK 55 61 3004, RSIN 85 17 86 571). The foundation's mission is to fund scientific research aimed at finding an effective treatment for Usher syndrome, a genetic condition that causes progressive deafblindness, while providing information and peer support to affected patients and families. It serves a target population of approximately 1,000 people in the Netherlands and approximately 400,000 worldwide. The foundation is ANBI-certified (Dutch Tax Authority) and CBF-certified (Central Bureau of Fundraising), holds dual recognition for tax-deductible donations and quality standards, and is operated entirely by volunteers.
The foundation's product and platform offerings include the Knowledge Portal (Kennisportaal) — a comprehensive information platform on symptoms, diagnosis, research, and living with Usher syndrome; the CRUSH Database — an international clinical patient registry collecting audiograms, field-of-vision examinations, and DNA results in partnership with Radboudumc; the USH Podcast series featuring researchers and patients; and a printed patient brochure. Its technology stack is non-proprietary: digital infrastructure relies on standard web platforms, Mollie for payment processing, and WhyDonate for campaign pages. There are no APIs, mobile applications, or software-as-a-service products.
The foundation is funded exclusively through donations, with diversified revenue streams including one-time contributions via iDEAL/Wero, periodic gift agreements (Schenkingsovereenkomst) offering maximum Dutch tax deductibility, legacy bequests exempt from Dutch inheritance tax since 2016, sponsorships of volunteer-organized athletic and community events, and cross-border donations from Belgium via the Transnational Giving Europe network administered by the King Baudouin Foundation (5% administrative fee). Its GTM motion is community-led and event-driven: the foundation engages patients, families, and supporters through awareness campaigns, Usher Awareness Day (third Saturday of September), and peer support networks. There are no shareholders, venture funding, or commercial revenue; the organization is governed by a Supervisory Board, Management Board, and Treasurer (Rick Brouwer) and operates without paid staff.
Stichting Ushersyndroom firmographics
Firmographics- Name
- Stichting Ushersyndroom
- Legal name
- Stichting Ushersyndroom
- Website
- https://ushersyndroom.nl
- Company type
- Private
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Stichting Ushersyndroom is a Dutch volunteer-operated non-profit foundation that funds scientific research into Usher syndrome (progressive genetic deafblindness) and provides information and peer support to affected patients and families in the Netherlands and internationally.
- Ownership category
- akta.pro rank
Stichting Ushersyndroom industry classification
Industry- Product category
- Rare Disease Patient Advocacy Foundation
- NAICS
- Grantmaking Foundations (813211), Voluntary Health Organizations (813212)
- SIC
- Services-Social Services (8300), Services-Health Services (8000)
- akta.pro primary industry
- Health & Medical Research Grantmaking Foundations (BPAGAKAL)
Keywords
Where Stichting Ushersyndroom is headquartered
LocationHeadquarters
- HQ city
- Amsterdam
- HQ country
- Netherlands
- HQ region
- Europe
Offices3 records
Markets served
Stichting Ushersyndroom business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Operations, Marketing or Sales, Technology or R&D, Personnel
Revenue model
- One-time Donations: Individual donors make one-time contributions via iDEAL/Wero, bank transfer, or credit card. The foundation processes these through Mollie payment system for secure transactions.
- Periodic/Recurring Donations: Donors can set up periodic gifts through written agreements ( Schenkingsovereenkomst ) for a minimum of 5 years with equal annual amounts. These periodic gifts offer maximum tax deductibility benefits for Dutch donors.
- Legacies and Bequests: Individuals can include Stichting Ushersyndroom in their testament through erfstelling (inheritance bequest) or legaat (specific legacy). Since 2016, inheritances to charities are exempt from Dutch inheritance tax.
- Cross-border Donations (Belgium): Through the Transnational Giving Europe network, Belgian donors can make tax-efficient donations via the King Baudouin Foundation. A 5% administrative fee is deducted.
- Sponsorships and Campaign Support: Supporters can sponsor specific events or campaigns organized by the foundation or its volunteers. The foundation facilitates this through action platforms like WhyDonate.
Go-to-market motion2 records
Distribution channels7 records
Marketing channels9 records
Stichting Ushersyndroom product offering
Product offeringCore offering
Stichting Ushersyndroom is a Dutch non-profit foundation that funds cutting-edge scientific research into Usher syndrome to develop effective treatments that halt progressive deafblindness. It operates a Knowledge Portal (Kennisportaal), the CRUSH international patient database, the USH Podcast series, and patient brochures to inform and support patients and families. The foundation is 100% volunteer-operated, ANBI and CBF certified, and relies entirely on donations, legacies, and sponsorships.
Product overview
Stichting Ushersyndroom operates primarily as a charitable research foundation rather than a software product company. Its main offerings include: the Knowledge Portal (Kennisportaal), a comprehensive information platform for patients and families; the CRUSH Database, an international patient registry for research purposes; the USH Podcast series; and informational materials such as patient brochures. These offerings work together to fulfill the foundation's mission of funding scientific research and providing support to people affected by Usher syndrome.
Differentiator
Problem solved
Functional benefit
Products and services
- Knowledge Portal (Kennisportaal) A comprehensive online knowledge platform providing information about Usher syndrome for patients, families, and caregivers, including details on symptoms, diagnosis, treatments, research, and living with the condition. Developed by and for people with Usher syndrome.
- CRUSH Database An international patient database collecting clinical data including audiograms, field of vision examinations, and DNA results from patients diagnosed with Usher syndrome, enabling researchers to map disease progression and support future clinical trials.
- USH Podcast A podcast series featuring interviews with researchers, patients, and professionals discussing Usher syndrome, psycho-educational programs, and related topics.
- Patient Brochure A printed informational brochure about Usher syndrome available for patients and families, providing accessible information about the condition.
Quantifiable outcome
- ANBI and CBF certifications ensure donations are tax-deductible and meet strict quality standards
Companies that use Stichting Ushersyndroom
Customer profileNamed customers4 records
Segments4 records
Ideal customer profiles4 records
Stichting Ushersyndroom technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Stichting Ushersyndroom partnerships and signals
Strategic signalPartnerships
Ten partnerships are on record, tiered core and minor.
- Radboudumc Expert Centre Usher SyndromecoreThe Radboudumc in Nijmegen was recognized by the Dutch Ministry of Health as the National Usher Syndrome Expert Centre. The foundation funds the CRUSH database and natural history studies at this center. The expert centre is led by ENT doctor Dr. Ronald Pennings and ophthalmologist Dr. Suzanne Yzer, who collaborate on multidisciplinary patient care and research.
- Koning Boudewijnstichting (King Baudouin Foundation)coreBelgian donors can make tax-efficient cross-border donations through the TGE (Transnational Giving Europe) network administered by the King Baudouin Foundation. This partnership enables Belgian taxpayers to support Dutch charitable causes with tax benefits.
- VSOP (Vereniging Samenwerkende Ouder- en Patiëntenorganisaties)minorStichting Ushersyndroom is a member of VSOP, the umbrella organization for rare and genetic conditions in the Netherlands. VSOP represents over 90 member organizations for approximately 7,000 rare diseases. Membership provides access to policy information, collaboration opportunities, and connections to EURORDIS, EGAN, and EPF.
- Usher Syndrome CoalitionminorInternational umbrella organization for Usher syndrome advocacy and research acceleration. Works to increase awareness, accelerate research, and build Usher communities globally.
- CUREUsherminorBritish/Irish fund-raising organization focused on increasing knowledge, participation, cooperation, and research into Usher syndrome.
- Treatrush (TreatREtUsher)minorEuropean research network with the objective to find a treatment for the blindness caused by Usher syndrome.
- Koninklijke KentalisminorThe foundation collaborates with Kentalis on research and support programs. Dr. Sonja van de Molengraft, a PhD candidate at University of Groningen affiliated with Kentalis, conducts psycho-educational research supported by the foundation.
- National Usher Syndrome Expert CentrecoreEstablished in 2016 and re-recognized in October 2021 for another five years by the Dutch Ministry of Health, Welfare and Sport (VWS). Provides multidisciplinary care for Usher patients with an Usher desk for appointments. The foundation supports this center's CRUSH database and patient registry activities.
- Oogvereniging (Eye Association) Contact GroupminorCollaborates with the Oogvereniging's Usher syndrome contact group which organizes the annual Usher Day and regional Usher Café meetings. Also coordinates WhatsApp groups for peer support.
- WhyDonateminorFundraising action platform where supporters can create personal campaign pages for sponsored events to raise funds for the foundation.
Scale indicators5 records
Recent moves6 records
Expansion highlights5 records
Stichting Ushersyndroom competitors and assessment
Company assessmentOthers
- Koninklijke Kentalis: Dutch organization supporting deaf and hard-of-hearing individuals, including psycho-educational research collaborations with Stichting Ushersyndroom on Usher patients.
- Stichting Fonds Doen: Dutch grantmaking foundation supporting innovative charitable initiatives in the Netherlands. Adjacent funder of similar non-profit health/community projects and potential co-funding partner.
- VSOP: Dutch umbrella organization for rare and genetic disease patient organizations; Stichting Ushersyndroom is a member. Adjacent peer providing policy advocacy and ecosystem support for rare-disease foundations.
Broad incumbents
- Foundation Fighting Blindness: Larger, well-established US charity funding research on inherited retinal diseases including Usher syndrome and retinitis pigmentosa. A broader incumbent with overlapping mission on the vision-loss component.
- Retina International: Global umbrella for retinal degeneration patient organizations including Usher-focused affiliates. Overlaps on the retinitis pigmentosa side of Usher syndrome and operates in the same awareness/research space.
Emerging players
- Hear See Hope: Family-led non-profit focused specifically on Usher syndrome, supporting research and community for affected individuals. Closely comparable niche US peer in Usher-specific fundraising.
- TreatRush (TreatREtUsher): European research network with the explicit objective of finding a treatment for the blindness caused by Usher syndrome. Direct research-network counterpart collaborating with Stichting Ushersyndroom.
Regional players
- Stichting Oogvereniging: Dutch Eye Association operating a Usher syndrome contact group that organizes the annual Usher Day and regional peer meetings. Adjacent domestic partner sharing patient support scope.
Direct peers
- Usher Syndrome Coalition: US-based international umbrella organization for Usher syndrome advocacy and research acceleration. Direct counterpart in the global Usher network referenced explicitly by Stichting Ushersyndroom as a coalition partner.
- CUREUsher: British/Irish fundraising organization focused exclusively on increasing knowledge, participation, and research into Usher syndrome. Explicitly listed as a strategic partner of Stichting Ushersyndroom.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
Stichting Ushersyndroom social profiles
Digital presenceStichting Ushersyndroom financial estimates
Financial estimateRevenue estimate
Valuation estimate
Stichting Ushersyndroom leadership team
Management profileNumber of profiles
Profiles1 record
Stichting Ushersyndroom funding detail
Funding detailFunding overview
Funding rounds
Investors
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Stichting Ushersyndroom M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Stichting Ushersyndroom
What does Stichting Ushersyndroom do?
Stichting Ushersyndroom is a Dutch non-profit foundation that funds cutting-edge scientific research into Usher syndrome to develop effective treatments that halt progressive deafblindness. It operates a Knowledge Portal (Kennisportaal), the CRUSH international patient database, the USH Podcast series, and patient brochures to inform and support patients and families. The foundation is 100% volunteer-operated, ANBI and CBF certified, and relies entirely on donations, legacies, and sponsorships.
Is Stichting Ushersyndroom a public or private company?
Stichting Ushersyndroom is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Stichting Ushersyndroom founded?
Stichting Ushersyndroom was founded in -1. It employs 1 to 10 people.
Where is Stichting Ushersyndroom based?
Stichting Ushersyndroom is headquartered in Amsterdam, Netherlands, in the Europe region.
How does Stichting Ushersyndroom make money?
Five revenue lines are on record. One-time Donations are the primary driver. The others are periodic/Recurring Donations, legacies and Bequests, cross-border Donations (Belgium) and sponsorships and Campaign Support.
Who are Stichting Ushersyndroom's main competitors?
Others on record are Koninklijke Kentalis, Stichting Fonds Doen and VSOP. Broad incumbents are Foundation Fighting Blindness and Retina International. Emerging players are Hear See Hope and TreatRush (TreatREtUsher). Stichting Oogvereniging is listed as a regional player. Direct peers are Usher Syndrome Coalition and CUREUsher.
Does Stichting Ushersyndroom have an API?
No public API is recorded for Stichting Ushersyndroom.
What industry is Stichting Ushersyndroom in?
Stichting Ushersyndroom's product category is Rare Disease Patient Advocacy Foundation. Its primary akta.pro industry code is BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813211 and its SIC code is 8300.