SAVE THE DATE - 27TH MAY - Click here for more info

Usher Syndrome Ireland
Usher Syndrome Ireland
  • 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
  • More
    • 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

About Us

Usher Syndrome Ireland’s Story

Usher Syndrome Ireland is borne out of an online support group, called Usher Ireland, on Facebook since 2014. This online group was created at a time when there was little to no way for people living with Usher syndrome in Ireland to find others living with the condition. Usher Ireland was moderated by a team of four women who have Usher syndrome - Anne, Carol, Deborah, and Karen, with the purposes of connecting people in Ireland and globally, as well as sharing information about the disease and research updates too. 


It was never imagined this team would found and establish Usher Syndrome Ireland along with two other women, Audrey and Trudy. We are extremely proud that our all-woman and patient-led founding Board of Directors, with a vast array of expertise and knowledge, share the same passion to found a charity that will focus exclusively on the Irish Usher syndrome community continuing to grow the goals of the original online support group, along with the objectives of stimulating a much needed drive for scientific research for a cure or treatment for Usher syndrome.


Usher Syndrome Ireland is a voluntary, non-profit charity meaning that no-one is paid for their time and work. Therefore we greatly appreciate for the dedication, time and energy that each member give to Usher Syndrome Ireland in order to make the organisation a success and enable it to continue in its mission. 

Meet Our Team

Read more about our team here. 

Meet Our Team

Our Mission Statement

Usher Syndrome Ireland's mission, as per its governing constitution, is to promote and protect the health of those suffering from genetically inherited Usher Syndrome, through the provision of information for people affected by this condition, and by funding scientific research into the causes, treatment and cure of all types of the condition and publishing the useful results.


 Call/Text

+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


Copyright © 2021 - 2023 Usher Syndrome Ireland - All Rights Reserved.




  • Archived Newsletters
  • Donate Today
  • Accessibility
  • Privacy Policy
  • Site map
  • Subscribe

We use cookies.

We use cookies and other tracking technologies to improve your browsing experience on our website and to analyse our website traffic, and to understand where our visitors are coming from.

DeclineAccept