STICHTING USHERSYNDROOM
Many of the people active within our foundation either have Usher syndrome themselves or are a partner, parent, or friend of someone with Usher syndrome. Each of them has their own story and experience. The active involvement of all these people, along with their families, friends, and colleagues, strengthens our foundation and sets us apart from other charitable organizations.
ACCOUNTABILITY
This website provides an up-to-date report of all our activities, including the research we support and the fundraising events organized by us or our volunteers.
Are you interested in our financial annual report or the policy plan? You can view these documents by clicking the button below.
NETWORK ORGANIZATION
Stichting Ushersyndroom is a network organization, a non-hierarchical structure in which teams of experts and enthusiasts work in changing compositions on a focus area, event, and/or campaign idea.
Characteristics of this organizational model include individual initiative, temporary collaborations, self-organization, and a shared external identity. It is a broad concept, but flexibility, openness, and personal responsibility are key elements.
CORE VALUES
Participation, equality, maintaining personal autonomy, and mutual trust are therefore THE core values of Stichting Ushersyndroom.
HISTORY
In June 2012, the Belt family founded the MUS Foundation (My Usher Syndrome) out of a need for information about Usher syndrome.
Following the broadcast of the documentary “The small world of Machteld Cossee” at the Film Festival and on TV in 2015, the Usher community in the Netherlands grew significantly. There was increasing awareness and recognition of the condition. In 2016, a new board took over from the Belt family, and the MUS Foundation was renamed Stichting Ushersyndroom (Dutch Usher Syndrome Foundation).
OUR MISSION
Usher syndrome is a severe condition that profoundly impacts the lives of those affected and their social environment. From the depths of our hearts, we want this condition to no longer exist.
That’s why we have formulated our mission: “By 2030, the Netherlands will be aware of Usher syndrome, and its diagnosis, treatment and care will have become standard.”
This is the new and challenging mission for our Stichting Ushersyndroom and everyone involved. We strive for proper guidance and treatment of people with Usher syndrome and their close circle, which requires raising awareness.
In the coming years, we have a long road ahead, so we have also set interim goals for 2025 and 2027. In our strategic plan, we have outlined 5 key themes with action points:
- Research
- Fundraising
- Communication
- Internationalization
- Organization
We invite you to read our Strategic Plan and help us achieve our goal.
OUR VISION
Stichting Ushersyndroom believes in the power of a network organization.
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- Partnership: establishing meaningful relationships based on mutual trust
- Flexibility and responsiveness to change
- Independent work with room for individual initiatives
NON-PROFIT STATUS
Stichting Ushersyndroom does not aim to generate profit. The foundation relies entirely on volunteers. All proceeds from sponsorships, bequests, and donations go directly towards achieving the foundation’s objectives.
ANBI STATUS
Stichting Ushersyndroom holds ANBI status, making your donation tax-deductible from income tax. This applies only to donors who are tax liable in the Netherlands.
CBF ACCREDITED
The foundation is recognized as a Certified Charity by the Central Bureau for Fundraising (CBF), meaning we meet strict quality standards.
CONTACT
Raapopseweg 128
6824 DV Arnhem
Bankgegevens:
NL 85 RABO 0362.3905.25
BIC: RABO NL2U
t.n.v. Stichting Ushersyndroom
KvK: 55 61 3004
RSIN 85 17 86 571
