On Charities Trustees' Week, we want to say a very BIG thank you to our trustees. Our amazing trustees are volunteers driven by one goal: to improve the lives of individuals and families living with Usher syndrome - a rare, progressive condition that causes both vision and hearing loss. 💚

Updates that matter - Connecting patients, researchers, and organisations in the Usher community. Sign up today: tinyurl.com/SignUpToUSI #UsherSyndrome #RareDisease #HearingLoss #RetinitisPigmentosa #BlindnessAwareness #NonProfit #PatientAdvocacy #SpeirGorm #Ireland

This week is Invisible Disabilities Week, and we are asking you to share: What invisible challenges do you wish others could understand better? Let us know in the comments below. #SeeTheInvisible #SeeUSH #UsherSyndrome #HearingLoss #RP #RetinitisPigmentosa #BlindnessAwarenessMonth #SpeirGorm

There needs to be a universal disability payment. The current means-tested support can then become a 2nd layer. This would create a fairer system as there’s many people with disabilities who can't work but still get nothing under the current rules yet endure higher living costs! #SpeirGorm #Budget26

Ever wondered what vision loss from Usher syndrome looks like? Our simulation glasses are helping people experience it & they look great in action during a recent Hackathon as part of the INCLUDE Deafblind Project, led by SMARTlab at UCD & The Anne Sullivan Foundation. 👀: www.ucd.ie/smartlab/new...

A big thank you to the Irish Society of Hearing Aid Audiologists (ISHAA) for inviting us to speak & have a stand at their recent conference. We’re pleased to see growing awareness & understanding of Usher syndrome within the audiology community! #UsherSyndrome #Audiology #Accessibility #Healthcare

We’re proud to share the results of our second major research project!🎉 This landmark scoping study identifies the data and model needed to lay the groundwork for a successful, sustainable Usher syndrome registry in Ireland. 🔗: usherireland.org/ush-registry... #RareDisease #PatientRegistry

The different types of Usher syndrome - do you know them all? Follow along & share to help spread awareness for #USHDay2025. 🩷 #UsherSyndrome #USH1 #USH2 #USH3 #USH4 #RareDisease #Genetics #DNA #Mutations

Are there other symptoms in Usher syndrome? Let’s explore what researchers are asking! Have you experienced any of these? Part 2 in comments below. #UsherSyndrome #RareDisease

Thrilled to share exciting news from Nacuity Pharmaceuticals. This approach is expected to work regardless of the USH type. For the first time, we may be looking at a treatment that can help slow vision loss while we continue to wait for a cure. #UsherSyndrome 🔗 www.nacuity.com/news/nacuity...

What happens to balance in Usher syndrome? Let’s find out what keeps us steady! Follow along & share to help spread awareness of this rare condition impacting only approx 250 people in Ireland.  💚 #UsherSyndrome #Balance #Vestilbular #RareDisease #USHDay2025 #SpeirGorm

Are you a young person living with a retinal condition? Register today for the Retina International Youth World Conference! Saturday, September 27 at 4pm CET> us06web.zoom.us/meeting/regi... #Conference #Science #Retina #RetinaYouth

What happens to vision in Usher syndrome? Let’s take a look in today’s post! Follow along & share to help spread awareness. 🩷 (Post1/2) #USDay2025 #UsherSyndrome #UsherSyndromeAwarenessDay #RareDisease #RP #RetinitisPigmentosa

What happens to hearing in Usher syndrome? Dyk: Usher syndrome is the leading genetic cause for deafblindness, yet people with this condition have normal vision at birth! (1/2) #RareDisease #Speirgorm #HearingLoss #Deaf #USHDay2025

Do you know what is Usher syndrome? Here’s a simple intro to get you started! Over the next few weeks, we’ll take a deeper dive into Usher syndrome and its symptoms in the lead-up to #USHDay2025 on 20th September. Follow along & share to help spread awareness. 💛 #RareDisease #SpeirGorm #Awareness

Exciting opportunity for teens with Usher syndrome - free Robotics Coding Workshop will take place at TCD where teens can learn coding, connect & have fun with peers in a friendly, supportive environment. For more info, email Dr Katie O’Connor: [email protected] #UsherSyndrome #Coding #UsherKids

Our recap of #USH2025 - International Symposium on Usher Syndrome is now live, highlighting the exciting research & innovative work currently underway to find treatments for this rare disease: usherireland.org/ush2025 #UsherSyndrome #Genetics #IRD #Research #IRDs #HearingLoss #RP

New research delivering a corrected version of the faulty gene that causes Usher syndrome — PCDH15 — was able to restore hearing in mouse models and also showed potential in retinal organoids and nonhuman primates for improving vision. hms.harvard.edu/news/second-...

Ready to gain a fresh perspective & the benefits our previous client experienced? More info & sign-up form: forms.gle/Juu4mabKfatH... This initiative is supported by @amgen.bsky.social ’s 2024 #RareIs grant. It’s open to anyone over 16 living in Ireland who has a connection to Usher syndrome.

📢 Calling all healthcare professionals in Ireland! Learn more about Usher syndrome by availing of a free resource pack sent to your clinic by emailing the address to [email protected] You can explore everything inside & watch our animation video here: usherireland.org/are-you-ushe...

🌟 From the bottom of our hearts – thank you Grace 🌟 Grace recently took on the Belfast Marathon in support of Usher Syndrome Ireland, raising an incredible €1,244.91. We are ever so grateful to Grace, and to supporters like her who help raise much-needed funds to help keep our work going. 💚

Today is the 1st ever UN-recognised International Day of Deafblindness. According to stats shared at USH2025 in the NL, it’s believed over 700,000 pple globally are living with Usher syndrome - the leading genetic cause of deafblindness - with around 12,000 babies born each year with USH globally.

What does deafblindness mean to you? It may not be what you think! #UsherSyndrome #RareDisease #Medics #DBAW2025 #SpeirGorm #LearnAboutUSH #CureUSH

Thank you to our #USHIreland team & everyone who supported them at the recent Vhi WMM! Together, they raised a fantastic €1,831. We’re so grateful for your support. 💚 Interested in fundraising much-needed funds for us? Please get in touch at [email protected] #UsherSyndrome #SpeirGorm

We’re asking EVERYONE to support the #ImNotInvisible10YearsOn campaign by sharing photos. It’s been 10 years since the #ImNotInvisible campaign & recognition for deafblindness still hasn’t been implemented meaning a lack of adequate services. #SpeirGorm #UsherSyndrome #DualSensoryLoss #DeafBlind

It started with 500+ photos. Now it’s time to do it again. Watch the original #ImNotInvisible campaign from 2015 & join us for #ImNotInvisible10YearsOn. Post your photo. Tag @usherireland.org . Let’s make the deafblind community feel seen, heard & supported. #UsherSyndrome #SpeirGorm #DeafBlind

Today marks 10 yrs since Carol Brill & others urged the State to recognise deafblindness as a unique disability. The call was clear & supported - yet still has not been implemented. We’re reigniting it with #ImNotInvisible10YearsOn. Post your photo & tag @usherireland.org #Speirgorm #UsherSyndrome

This is a fantastic charity, created by people with usher syndrome. It does amazing work to address policies and research as well as raising the profile of this rare disease that causes deafblindness

Can we ask you for your help please? Can you nominate Usher Syndrome Ireland for the AIB Community €1 Million Fund here: aib.ie/personal-for... We'd be so grateful as your nomination could help us access much-needed funding to support our work. More info in the image 💚 #SpeirGorm #SpeirGhorm

Meet Miriam - Miriam is a qualified life coach dedicated to supporting YOU - whether you're living with Usher syndrome or you're a parent or carer of someone who is. More info & registration form here: forms.gle/Juu4mabKfatH... #UsherSyndrome #Support #Coaching

Welcome Usher Syndrome Ireland! We’re proud to spotlight @usherireland.org. This organisation supports people with a rare genetic condition that causes combined hearing and vision loss. We're thrilled to have them in the DFI network. Read more: bit.ly/4iVfdxF

Meet Carol who's delighted to support Usher Syndrome Ireland as our new Company Secretary! A BIG welcome to the team Carol — we’re so thrilled to have you on board! 💚 #UsherSyndrome #Volunteer #Welcome #USHCommunity #LivedExperiences #InclusiveTech #AssistiveTechnology #TogetherWeCan

Stay informed & connected on all things related to Usher syndrome by joining our mailing list! Our April edition is dropping soon, and it’s a packed one full of exciting updates! Sign up here: tinyurl.com/SignUpToUSI #UsherSyndrome #Newsletter #RareDisease #RetinitisPigmentosa #Research #Support

Assessing the supportive care needs of parents of children with rare diseases in Ireland -This descriptive quantitative study employed survey techniques to assess parental support needs @rarediseasectn.bsky.social @rarediseasesint.bsky.social @eurordis.bsky.social pubmed.ncbi.nlm.nih.gov/39837019/

Calling medics/healthcare professionals. Did you know you can obtain Usher syndrome awareness packs specially created for you & your colleagues. Find out more about these packs & how you can order yours: usherireland.org/are-you-ushe... #Medics #UsherSyndrome #RareDisease #HCP #HCPs #Healthcare

Wow! Grace is taking on the incredible challenge of the Belfast City Marathon for us, a cause deeply personal to her as her dad, aunt , & two uncles all live with Usher syndrome, a rare condition that causes progressive sight & hearing loss. Pls support & repost 💚 www.justgiving.com/crowdfunding...

The lovely people in the @rarediseasectn.bsky.social have done a fantastic job of bringing a diverse range of perspectives together for the #RareResearch25 conference. Researchers, clinicians, industry reps, regulators and many patients and advocates in the room.

Wow! Grace is taking on the incredible challenge of the Belfast City Marathon for us, a cause deeply personal to her as her dad, aunt , & two uncles all live with Usher syndrome, a rare condition that causes progressive sight & hearing loss. Pls support & repost 💚 www.justgiving.com/crowdfunding...

Will you be part of the #TeamUSHIreland & help raise funds for Usher Syndrome Ireland? 🔗 Sign up: www.vhiwomensminimarathon.ie 💙 Set up your fundraiser & click ‘Join Team’: www.idonate.ie/team/ushirel... #UsherSyndrome #VhiWMM #RunForCharity #Running #RunIreland #RareDisease #VolunteerCharity

#SpeirGorm #SpeirGhorm community! On this gorgeous, stunning day, why not do a little bit of good by reposting this 😎 We’re a very small, volunteer-run charity & we really need all the help to find someone willing to dedicate 3-4 hours a month as our company secretary! No other duties involved 🙏

Are you organised & detail-oriented? Would you like to dedicate just a few hours a month to a small, but worthy Irish cause? We’re urgently looking for a volunteer company secretary to join our team. More details here: www.boardmatch.ie/board-vacanc... #SpeirGorm #IrishBlueSky #SpeirGhorm #Repost

There's no volunteering too small! Microvolunteering Day is recognised every year on 15 April and promotes awareness of the concept and how it can enable worthy causes and individuals to better the world via bite-sized actions. #microvolunteeringday 🗓️: Mon 14 April, 10am-1pm 🎟️: buff.ly/o7B0n3O

Join something truly special with #TeamUSHIreland for the Vhi Women’s Mini Marathon & support those living with Usher syndrome by running, jogging, or walking for our volunteer-run charity. Plus, you'll receive one of our NEW USI t-shirts! Click 'Join Team' here: www.idonate.ie/team/ushirel... 🔁=💜

Anyone know the place to get customised t-shirts/vests in teal-coloured? #SpeirGorm #Help #VhIWMM

An interesting read from @civilsociety.bsky.social on UK charities exploring alternatives to X/Twitter, with a seemingly similar trend for Irish charities. #charity #NonProfit www.civilsociety.co.uk/news/in-dept...

With rising concerns over misinformation and online safety, many charities are rethinking their strategies on social media platforms such as X. In this @civilsociety.bsky.social blog, we’ve shared our approach, along with other charities, of how we’re navigating these changes: bit.ly/3XLUViq

📣 #IRDiRC Therapies Scientific Committee (TSC) is seeking 3 new experts in rare disease therapy development! 📩 Apply by sending your CV, biosketch, and letter of motivation to: [email protected] 📅 Deadline: 6 April 2025 🔗 More details loom.ly/Zyg_GDk

We're almost there! Irish Summer Time kicks in just 16 days, and from then until September, the sun won’t set before 7:56pm. 🎉 A big relief for SO many of us - especially those with Usher syndrome who experience night blindness! #Ireland #UsherSyndrome #RetinitisPigmentosa #HappyFriday #SpeirGorm

Hey #SpeirGorm - would you like to dedicate a few hours p/m to a good cause? We’re looking for a Company Secretary (voluntary role) to join our team! Email [email protected] to learn more. Experience required. Pls share & help us get the word out #Volunteer #UsherSyndrome #VolunteerIreland

Hey #SpeirGorm - would you like to dedicate a few hours p/m to a good cause? We’re looking for a Company Secretary (voluntary role) to join our team! Email [email protected] to learn more. Experience required. Pls share & help us get the word out #Volunteer #UsherSyndrome #VolunteerIreland