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Usher Syndrome Ireland
Usher Syndrome Ireland
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    • Home
    • Information
      • What is Usher Syndrome?
      • Usher Syndrome - Genetics
      • Adults - Newly Diagnosed?
      • Adults - USH Community
      • Newly Diagnosed Child?
      • Telling Your Child
      • Parents - USH Community
    • HCPs
      • Information for HCPs
      • Overview - Usher Syndrome
      • Create Accessibility
      • Talks/Presentations
    • Research
      • Usher Syndrome Research
      • Understanding USHResearch
      • USH Patient Registries
      • USH Research News
    • More Info & Resources
      • Usher Syndrome Leaflets
      • Yellow Sticker Campaign
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      • About Us
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      • Contact Us
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Together we can bring hope for sight & sound

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WHAT IS USHER SYNDROME?

Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural hearing loss and retinitis pigmentosa (RP) causing a slow progressive loss of sight. Some people with Usher syndrome also experience vestibular (balance) issues. It is the leading genetic cause for combined hearing and sight loss with an estimated 400,000 people worldwide having Usher syndrome with approx 200-260 people living in Ireland with this condition.

LEARN ABOUT USHER SYNDROME

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We are here to listen, support, and provide information. You can either, call, text, email, or fill out an online contact form. Click to find more details. 

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About Us

Meet Our Team

Meet Our Team

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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. 

About Us

Meet Our Team

Meet Our Team

Meet Our Team

Two women are smiling at the camera. They are wearing t-shirts with Usher syndrome Ireland's logo.

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. 

Meet Our Team

Latest News:

Usher Syndrome Ireland on Ireland AM

ProQR begins stage 2/3 Sirius trial for USH2A-exon 13

ProQR begins stage 2/3 Sirius trial for USH2A-exon 13

Deirdre and Prof Keegan chatting with the hosts on Ireland:AM.

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.

ProQR begins stage 2/3 Sirius trial for USH2A-exon 13

ProQR begins stage 2/3 Sirius trial for USH2A-exon 13

ProQR begins stage 2/3 Sirius trial for USH2A-exon 13

Logo for Sirius.

 Bringing hope to the Usher syndrome community, ProQR has recently begun dosing its first patients in its Phase 2 /3 Sirius trial for people with Usher syndrome due to mutations in exon 13 of the USH2A gene. This trial is testing whether its RNA therapy, ultevursen, is effective at halting vision loss. and whether it is safe and well-tolerated. More information can be found here. 

Nacuity SLO-RP Study

ProQR begins stage 2/3 Sirius trial for USH2A-exon 13

Nacuity SLO-RP Study

Nacuity Pharmaceuticals logo

  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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Copyright © 2021 - 2022 Usher Syndrome Ireland - All Rights Reserved.


Reg. Number: 688621 - Reg Charity Number: 20206288 

Registered address: 15 Windsor Terrace, Dun Laoghaire, Co. Dublin, A96 RF29, Ireland

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