Usher Syndrome Ireland

📣We are delighted to highlight the following speakers for our morning presentations at USH Connect 2024, on Saturday, 21st September 📣 - Jacqueline Turner, Genetic Counsellor: Update on USH research and live Q&A. - Dr Jackie Boylan & Dr Conan Donnelly: Essential discussion on the need for an Irish patient registry for Usher syndrome.  - Dr Solomon Kamal Uddin: Discussion on the challenges and support available for Rare Disease communities. - Kidist: Sharing her #RealUSHLives story as a teenager with Usher syndrome. - Official Launch: The morning sessions then wraps up with the official launch of the "Are You Usher Aware?" awareness pack for healthcare professionals. After a morning of insightful presentations, the afternoon at USH Connect 2024 offers a chance to unwind, celebrate, and connect with others in a more informal setting. Stay tuned for more details on our engaging afternoon sessions—this is a day you really won’t want to miss! ***Limited tickets remaining*** We have very limited tickets remaining for this event. Don't miss out - secure your tickets ASAP here: https://lnkd.in/eYAzWcuS #USHConnect2024 #UsherSyndrome #USHFamily #USHinResearch #USHDay #USHDay2024 #RareDisease #RareDiseaseIreland

Join Usher Syndrome Ireland as Our New Board Secretary! Are you organised, proactive, and passionate about making a difference? We’re looking for a new dedicated individual to join our team as the Board Secretary. Key Responsibilities: 📌 Liaise with chairperson to prepare the agenda for 5-6 meetings annually (mostly online) 📌 Record and distribute minutes of each board meeting 📌 Assist the chairperson in ensuring compliance with the CRO and CRA 📌 Stay updated on legislative, regulatory, and governance developments What We’re Looking For: 👉🏻Individuals who are passionate and dedicated, and willing to dedicate approx. 6-8 hours per month 👉🏽Experience in the Irish charity sector is a plus, but not essential 👉A personal connection to Usher syndrome would be a wonderful bonus Interested in joining our mission? View our application form for more details: https://lnkd.in/eK49T3pK #UsherSyndrome #RareDisease #RareDiseaseIreland #IrishCharity #Secretary #BoardOfDirectors #Volunteer #VolunteerIreland #IrishNonProfit #Voluntary #DeafBlindAwarenessWeek #DBAW

🌟 Support USH Connect 2024 and Make a Difference! 🌟 We are thrilled to host USH Connect 2024 on International Usher Syndrome Awareness Day, but we need your help to make this event a success and unforgettable for our attendees! Event Highlights: 📅 Date: Saturday, 21st September 📍 Location: The National Museum of Ireland – Decorative Arts and History 🎤 Keynote presentations from experts 🗣️ Real USH lives stories 🎉 #USHDay celebrations 💡 USH Youth Empowerment Workshop and more! To ensure we provide an amazing experience for our attendees, including a light lunch and inclusive activities, we are seeking sponsors to support this event. Why Sponsor? 🔹 Showcase your brand to an engaged community 🔹 Raise awareness for Usher syndrome 🔹 Empower individuals and families 🔹 Gain recognition on our social media, event materials, and during the event Your sponsorship can help us cover essential costs and ensure every attendee has a great day. How to Sponsor: Interested in becoming a sponsor? Reach out to us at contact@usherireland.org for more details. Thank you for helping us make USH Connect 2024 a success! 🙏 #USHConnect2024 #UsherSyndrome #CommunitySupport #SponsorOpportunity #CorporateSocialResponsibility, #CharityEvent #SupportCommunity #IrishCharity

🌟 Support USH Connect 2024 and Make a Difference! 🌟 We are thrilled to host USH Connect 2024 on International Usher Syndrome Awareness Day, but we need your help to make this event a success and unforgettable for our attendees! Event Highlights: 📅 Date: Saturday, 21st September 📍 Location: The National Museum of Ireland – Decorative Arts and History 🎤 Keynote presentations from experts 🗣️ Real USH lives stories 🎉 #USHDay celebrations 💡 USH Youth Empowerment Workshop and more! To ensure we provide an amazing experience for our attendees, including a light lunch and inclusive activities, we are seeking sponsors to support this event. Why Sponsor? 🔹 Showcase your brand to an engaged community 🔹 Raise awareness for Usher syndrome 🔹 Empower individuals and families 🔹 Gain recognition on our social media, event materials, and during the event Your sponsorship can help us cover essential costs and ensure every attendee has a great day. How to Sponsor: Interested in becoming a sponsor? Reach out to us at contact@usherireland.org for more details. Thank you for helping us make USH Connect 2024 a success! 🙏 #USHConnect2024 #UsherSyndrome #CommunitySupport #SponsorOpportunity #CorporateSocialResponsibility, #CharityEvent #SupportCommunity #IrishCharity

Are You Usher Aware? Exciting news! An Usher Syndrome Awareness Pack for Healthcare Professionals is coming soon! These packs are filled with essential resources to help spread crucial awareness and understanding of Usher Syndrome among healthcare providers. If you work in healthcare and want your clinic to receive a pack, simply send your name and address to contact@usherireland.org. #AreYouUsherAware #UsherSyndrome #RareDisease #Healthcare #HealthcareProfessionals #HCPs #LearnAboutUSH #MedicalEducation #PatientCare #HealthAwareness #HealthcareEducation #MedicalProfessionals #DoctorLife #NurseLife #HealthAdvocacy #ClinicianEducation #MedicalCommunity #HealthcareTraining #HealthProfessionals #ContinuingEducation

Usher syndrome, a progressive condition, is the leading genetic cause of combined vision and hearing loss, also known as dual-sensory loss. Due to its progressive nature, some people in the later stages of this condition identify as being deafblind. Deafblindness is often described as a condition where the loss of one sense is so severe that it cannot compensate for the loss of the other. However, this does not usually mean a complete loss of either sight or hearing, or both, for most people who are deafblind. Question of the day: How can communities become more inclusive for people with dual-sensory loss? Tell us below in the comments... #UsherSyndrome #DBAW #DBAW2024 #DBAW24 #RareAwareness #RareDisease #DeafBlind #LearnAboutUSH #DeafBlindness #Question #InclusionForAll #Inclusion #DeafBlindAwarenessWeek #Disability #SightLoss #HearingLoss #RP #RetinitisPigmentosa #Deaf #ISL 

Join Usher Syndrome Ireland as Our New Board Secretary! Are you organised, proactive, and passionate about making a difference? We’re looking for a new dedicated individual to join our team as the Board Secretary. Key Responsibilities: 📌 Liaise with chairperson to prepare the agenda for 5-6 meetings annually (mostly online) 📌 Record and distribute minutes of each board meeting 📌 Assist the chairperson in ensuring compliance with the CRO and CRA 📌 Stay updated on legislative, regulatory, and governance developments What We’re Looking For: 👉🏻Individuals who are passionate and dedicated, and willing to dedicate approx. 6-8 hours per month 👉🏽Experience in the Irish charity sector is a plus, but not essential 👉A personal connection to Usher syndrome would be a wonderful bonus Interested in joining our mission? View our application form for more details: https://lnkd.in/eK49T3pK #UsherSyndrome #RareDisease #RareDiseaseIreland #IrishCharity #Secretary #BoardOfDirectors #Volunteer #VolunteerIreland #IrishNonProfit #Voluntary #DeafBlindAwarenessWeek #DBAW

Save the Date for the International Usher Conference 2025 🎉 Hosted by Stichting Ushersyndroom, this conference will take place in the Netherlands next June over three days. It includes a two-day scientific symposium where researchers from around the world will share the latest in USH research, followed by a "Congrestival," a day dedicated to the USH community of which Usher Syndrome Ireland is excited to be a partner organisation of. We hope to see you all there! Check out Stichting Ushersyndrom's post below for more info and be sure to give them a follow too 💚 #USH2025 #USHCommunity #UsherSyndrome

A HUGE thank you to our wonderful #TeamUSHIreland: Deirdre, Lisa, Christina, Anne, Trudy, and Marguerite (not pictured), seen here celebrating their achievements with a well-deserved drink after completing the Vhi Women's Mini Marathon. They raised at least €2,524 for Usher Syndrome Ireland, with donations still coming in! Usher Syndrome is a rare genetic condition that affects both hearing and vision. Your support helps us move closer to finding a cure and supporting those living with this condition If you’d like to contribute, donations are still welcome! Visit iDonate via link in comments below. Stay tuned for our upcoming events and join us in making a difference! If you’d like to join #TeamUSHIreland, get in touch and we can find an event near you! #UsherSyndrome #TeamUSH #USHIreland #CureUSH #SupportUSH #Fundraise #Charity #NonProfit #IrishCharity #RunIreland ID: A group of women are sitting and standing around a table, each proudly holding up their medal from the Vhi Women's Mini-Marathon.

Here's what one attendee had to say about our event in 2023! Don't miss out on joining the USH community in Dublin this September and gain valuable insights and connections - get your tickets today. For more info and to get your tickets, visit: https://lnkd.in/eYAzWcuS Note: Tickets for this event are limited. Secure your spot by completing the registration form soon to avoid disappointment. #UsherSyndrome #UsherSyndromeIreland #USHConnect2024 #USHConnect #Ireland #USHCommunity #TogetherWeCan #USHSupport #USHResearch #USHStories