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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
      • USH Connect
    • 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
      • Life with USH - Blog
      • Help & Resources
      • Archived Newsletters
    • About Us
      • About Us
      • Meet Our Team
      • Contact Us
    • Support Us
      • Support Us
      • Donate Today
  • Home
  • Information
    • What is Usher Syndrome?
    • Usher Syndrome - Genetics
    • Adults - Newly Diagnosed?
    • Adults - USH Community
    • Newly Diagnosed Child?
    • Telling Your Child
    • Parents - USH Community
    • USH Connect
  • 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
    • Life with USH - Blog
    • Help & Resources
    • Archived Newsletters
  • About Us
    • About Us
    • Meet Our Team
    • Contact Us
  • Support Us
    • Support Us
    • Donate Today

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

Exciting News!!

An exciting and historic moment for Usher Syndrome Ireland as we fund for the first time, a research study for Usher syndrome.

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Info for HCPs

We are here to listen, support, and provide information. You can contact us in many ways, 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

A boy is getting his eyes examined.

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:

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. 


Read the full article here.

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

A Teams meeting with Dr. Irene Vázquez Domínguez, Usher Syndrome Ireland & Stichting Ushersyndroom

 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

Images taken during the event. 3 circle images shows speakers & a screen shows some of the attendees

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. 

READ MORE

Usher Syndrome Ireland on Ireland AM

Usher Syndrome Ireland on Ireland AM

Usher Syndrome Ireland Hosts its First-Ever Event - Connecting the Community

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.

Nacuity SLO-RP Study

Usher Syndrome Ireland on Ireland AM

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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+353 (89) 262 4696 

(Mon-Fri 10am-4pm)


Address

15 Windsor Terrace, 

Dun Laoghaire, Co. Dublin, 

A96 RF29


Reg. Number: 688621 

Reg Charity Number: 20206288


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