Usher Syndrome Ireland
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    • INFORMATION
      • What is Usher Syndrome?
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      • Adults - USH Community
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      • Telling Your Child
      • Parents - USH Community
      • USH Connect
    • HCPs
      • Information for HCPs
      • Overview - Usher Syndrome
      • Create Accessibility
      • Talks/Presentations
    • USH IN RESEARCH
      • USH Research News
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      • Are You Usher Aware?
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    • ABOUT US
      • About Us
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    • SUPPORT US
      • DONATE
      • Support Us
    • CRUSH TY Project
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  • HOME
  • DONATE
  • 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
  • USH IN RESEARCH
    • USH Research News
    • Usher Syndrome Research
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    • USH Research & Trials
    • USH Patient Registries
  • MORE INFO & RESOURCES
    • Are You Usher Aware?
    • Life with USH - Blog
    • Usher Syndrome Leaflets
    • Further Resources
    • Yellow Sticker Campaign
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  • ABOUT US
    • About Us
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Connecting the Community

A virtual event connecting the Irish USH community

***REGISTRATION NOW CLOSED***


We are very excited to announce our very first event, Connecting the Community will take place on #USHDay2022 (Saturday 17th September)! This will be a free virtual event open to all those who have Usher syndrome and their family members living in Ireland. 


What can you expect from this event?


  •  An amazing virtual opportunity to connect and chat with other people and family members living with Usher syndrome in Ireland from the comfort of your home 


  • A chance to ask questions and share your experiences with others


  • Hear presentations from our special guest speakers who will be providing advice and information. (see below)


  • A chance to get to know the team behind Usher Syndrome Ireland


When: 17th September

Time: 2:30pm

Where: Zoom Online


Don’t miss this opportunity to connect with your Irish USH community! 


Register here: registration closed

Closing date: Thursday 15th September


**This event is only open to residents living in Ireland (all 32 counties)**


After registration, you will receive a confirmation email containing additional information. Please check your spam folder if this is not in your inbox. Any queries, send us a message.

Text in image: "Connecting the Community. A virtual event connecting the Irish USH community. 17th S

Guest Speakers:

Jacqueline Turner

Jacqueline Turner

Jacqueline Turner

An image of Jacqueline Turner on an illustrated screen.

  Jacqueline Turner is a Genetic Counsellor, who is well known in the Irish rare disease community working as a genetic counsellor for over 25 years. She has seen many families affected with a range of genetic conditions including Usher syndrome.   

Dr Mark Pennesi

Jacqueline Turner

Jacqueline Turner

An image of Dr Mark Pennesi on an illustrated screen.

A Professor in Ophthalmology at the Oregon Health & Science University (OHSU) and Chief of the Ophthalmic Genetics Division at the Casey Eye Institute. At the highly regarded OHSU, he is one of many researchers who are working hard to find breakthroughs to end blindness caused by IRDs including Usher syndrome. Most notably, in 2020 Dr. Pennesi led a team in the BRILLIANCE study, to perform the first ever gene-editing (CRISPR-Cas9) procedure on a living human for LCA Type 10, an inherited condition causing sight loss with some promising early results 

Derek Lacey

Jacqueline Turner

Derek Lacey

An image of  Derek Lacey on an illustrated screen.

  Derek Lacey, ISHAA President, Derek is the President of ISHAA (Irish Society of Hearing Aids Audiologists) and has worked with many people with Usher syndrome over many years. He is joining our event to answer questions about hearing aids and cochlear implants, and the importance of choosing what is best for you. 


 Call/Text

+353 (89) 262 4696  (Mon-Fri 10am-4pm)


Registered Address

15 Windsor Terrace, Dun Laoghaire, Co. Dublin,  A96 RF29


Registered Charity Number: 20206288 - CHY Number: 23000 -  CRO Number: 688621 

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