STICHTING USHERSYNDROOM
At our foundation, many of those actively involved either have Usher syndrome themselves or are partners, parents, or friends of someone affected. Each person brings their unique story and experiences. This collective effort makes our foundation strong and sets us apart from other charitable organizations.
Our mission:
We aim to stop the progression of deafblindness caused by Usher syndrome!
To achieve this, we focus on innovative scientific research, sharing knowledge, and raising awareness. Together, we strive for a world where Usher syndrome does not limit our dreams, opportunities, or ambitions.
What we do
- Scientific research:
We support and fund cutting-edge scientific research to gain better insights into Usher syndrome and develop effective treatments. - Improving quality of life:
We provide a platform where patients, families, and caregivers can access all the information they need. Visit our *Knowledge Portal*. We’ve also developed a patient brochure and facilitate peer support. - Awareness and visibility:
We aim to increase awareness of Usher syndrome and foster greater understanding of its impact, ensuring the challenges of living with Usher syndrome are better recognized.
Use of funds
Stichting Ushersyndroom holds ANBI status, making your donations tax-deductible. The foundation is also recognized as a *Certified Charity* by the Central Bureau of Fundraising (CBF), meeting strict quality standards. We operate entirely with the help of volunteers, ensuring that all proceeds from sponsorships, legacies, and donations are fully dedicated to achieving our foundation’s goals.
Discover the groundbreaking research we’ve been able to fund thanks to the generous donations we’ve received.
Join Us!
Whether you are personally affected by Usher syndrome, a family member, a medical professional, or simply someone who wants to make a difference, we warmly invite you to join us!
Together, we can make a positive impact and change lives. Become part of Stichting Ushersyndroom today and contribute to a hopeful future.
**Together, we strive for a future without limits, without boundaries, and without Usher syndrome.**
Usher syndrome is a genetic condition. People with Usher syndrome are born deaf or hard of hearing and gradually lose both their hearing and vision over time. In some cases, balance problems may also occur. Eventually, they become both deaf and blind.
In the Netherlands, approximately 1,000 people are affected by Usher syndrome, and globally, the number is around 400,000. While there is currently no cure for Usher syndrome, there are promising and hopeful developments toward treatments that may halt the progression of hearing and vision loss.
TUNNEL VISION
A hallmark of the visual impairment in Usher syndrome is night blindness, which begins at an early age, and a progressively narrowing field of vision caused by Retinitis Pigmentosa. With Usher syndrome, it feels like you’re looking through an increasingly smaller tunnel (tunnel vision). More and more light-sensitive cells in the retina gradually die off. Eventually, the field of vision becomes so restricted that it’s as if you’re looking through a straw. Imagine what that must be like.
NO TREATMENT AVAILABLE YET
There is still no treatment available for Usher syndrome, but hopeful developments are on the horizon. Science faces significant challenges in finding solutions that could lead to a treatment for all 400,000 people worldwide who are deaf and blind due to Usher syndrome.
This is why Stichting Ushersyndroom funds projects and scientific research aimed at developing treatments and improving the quality of life for those affected. Our goal: *”By 2030, the Netherlands will recognize Usher syndrome, and diagnosis, care, and treatment will become standard.”*
WHEN YOU GRADUALLY BECOME DEAF AND BLIND
Usher syndrome is a severe condition that affects both hearing and vision. Living with Usher syndrome is life-changing and deeply impacts not only those affected but also their loved ones. Ultimately, people with Usher syndrome become both deaf and blind. To this day, there is no treatment to halt the progressive loss of hearing and vision.
Stichting Ushersyndroom funds scientific research to find an effective treatment. There is hope!
Join us in helping people with Usher syndrome continue to hear and see.
My greatest fear is losing my independence. It will be incredibly difficult for me to maintain a good quality of life if I am both deaf and blind.
LATEST NEWS
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CONTACT
Stichting Ushersyndroom
Raapopseweg 128
6834 DV Arnhem
info@ushersyndroom.nl
KvK: 55 61 3004
RSIN 85 17 86 571
Have you been diagnosed?
Then take a look at our Knowledge Portal and/or order the brochure. Broochure is only in Dutch.
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