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Together we can bring hope for sight & sound
Exciting News!!
An exciting and historic moment for Usher Syndrome Ireland as we fund for the first time, a research study for Usher syndrome.
About Us
Meet Our Team
Meet Our Team
We are an organisation that aims to increase awareness and understanding of Usher syndrome, be a trusted source of information, along with raising funds for scientific research to find a cure or treatment for Usher syndrome. You can learn more about us and read our mission statement here.
Meet Our Team
Meet Our Team
Meet Our Team
Our organisation is run entirely by passionate volunteers meaning there's no paid staff and no team member is paid for their time or work. Therefore, we truly appreciate the dedication each one gives to help further the cause of Usher Syndrome Ireland. Read more about each of our amazing team members and why they became involved.
Latest News:
New research aims to expand a method of gene therapy with hopes it will restore vision loss in USH2A
New research aims to expand a method of gene therapy with hopes it will restore vision loss in USH2A
New research aims to expand a method of gene therapy with hopes it will restore vision loss in USH2A
A University of Houston researcher is expanding a method of gene therapy with the hopes it will restore vision loss in Usher Syndrome Type 2A (USH2A), a rare genetic disease.
The National Eye Institute has awarded Muna Naash, John S. Dunn Endowed Professor of biomedical engineering, $1.6 million to support her work.
Tears as a source of information for USH1B?
New research aims to expand a method of gene therapy with hopes it will restore vision loss in USH2A
New research aims to expand a method of gene therapy with hopes it will restore vision loss in USH2A
In the pilot study titled, “Investigating the exosome content as a novel marker for Usher syndrome 1b”, Dr. Irene Vázquez Domínguez at RadboudUMC, Netherlands, will investigate if tears can be used as a source of information to help improve the current knowledge of the disease and also, if they can be used to better predict the development of Usher Syndrome type 1b. This is a one year study being co-financed by Usher Syndrome Ireland in a collaboration with main financer, Stichting Ushersyndroom. More information can be found here.
Usher Syndrome Ireland Hosts its First-Ever Event - Connecting the Community
New research aims to expand a method of gene therapy with hopes it will restore vision loss in USH2A
Usher Syndrome Ireland Hosts its First-Ever Event - Connecting the Community
Recently, Usher Syndrome Ireland successfully hosted its first-ever event, Connecting the Community, bringing together for the very first time in Ireland the Usher syndrome community.
Usher Syndrome Ireland on Ireland AM
Usher Syndrome Ireland on Ireland AM
Usher Syndrome Ireland Hosts its First-Ever Event - Connecting the Community
Our board member Deirdre, and Prof Keegan, recently appeared on national TV on Ireland:AM, to raise awareness of Usher syndrome and Usher Syndrome Ireland. You can watch back by searching episode number:128 on Virgin Media Player.
Nacuity SLO-RP Study
Usher Syndrome Ireland on Ireland AM
Nacuity SLO-RP Study
Nacuity has begun its Phase 1/2 clinical trial of Nacuity’s proprietary NPI-001 tablets, the SLO-RP Study, and are now enrolling patients with RP associated with Usher syndrome. This therapy focuses on the treatment of ocular oxidative stress in the retina which they believe may potentially slow down the degeneration of the photoreceptors cells as experienced by patients with RP associated with Usher syndrome. Nacuity expects to report interim safety results from this study during the third quarter of 2022 and first efficacy results second quarter 2023. More information can be found here.
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