iiinova — where your digital self keeps evolving

Alport UK @alportuk.bsky.social · 11/12/2025

Vote today and share with friends and family: Nominate Alport UK for a £1,000 Christmas draw. In the 12 days leading up to Christmas, 120 charities will be awarded £1,000 each. It takes 1 minute to complete tinyurl.com/alportuk

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Alport UK @alportuk.bsky.social · 09/12/2025

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Alport UK @alportuk.bsky.social · 09/12/2025

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Alport UK @alportuk.bsky.social · 20/08/2025

Do we have your email? Want to know about upcoming events? Drop us your email to be added to Mailchimp and never miss out again! Info@alportuk.org or DM now!

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Alport UK @alportuk.bsky.social · 18/08/2025

Goodluck Sam, Adam and all taking part in the World Transplant Games! #transplantgames #alportuk #germany #worldtransplantgames

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Alport UK @alportuk.bsky.social · 07/08/2025

Alport Warriors, Save the date! Alport Winter Wonderland Day, 6 December 2025 London More information and registration coming soon. Can you hear Santa’s sleigh bells? #familyday #alportwarriors #familyandfriends #winterwonderland

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Alport UK @alportuk.bsky.social · 28/07/2025

Join Alport Warriors! A supportive FB group for those living with Alport Syndrome. www.facebook.com/groups/17746... Because no one should face this alone. #AlportWarriors #AlportSyndrome #RareDiseaseCommunity #SupportNetwork #AlportUK

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Alport UK @alportuk.bsky.social · 23/07/2025

We're still smiling! 2025 Nottingham info day was a hit! The Alport UK team is already planning the next one. Comment “Christmas” for details on our Dec 6 winter wonderland meetup! 🎄 #Christmas #NottinghamInformationDay #PeopleLivingWithAlportSyndrome #Community #Collaboration

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Alport UK @alportuk.bsky.social · 21/07/2025

Taking part in the British Transplant Games? 🏅 We want to share your inspiring journey! Comment if you’re competing, and we’ll connect. #TransplantGames #AlportUK #TransplantWarrior #BritishTransplantGames #ShareYourStory #OrganDonationMatters

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Alport UK @alportuk.bsky.social · 15/07/2025

Engagement Managers wanted! Do you enjoy supporting others? Apply now info@alportuk.org #alpotuk #volunteer #engagement

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Alport UK @alportuk.bsky.social · 11/07/2025

Another fantastic day! - Great Q&A with Alport syndrome experts - Kids & teens loved the high-energy workshop! - Alport Avengers enjoyed dinner & disco bowling! - Media team captured it all! Want to connect? Email info@alportuk.org

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Alport UK @alportuk.bsky.social · 10/07/2025

Exercise tips At our recent Alport information day in Nottingham Emma Watson and Rosey Billaney from @leicesteruniversity shared the importance of exercise for people living with Alport Syndrome. Check out @kidneybeam for more tips and tricks to stay healthy!

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Alport UK @alportuk.bsky.social · 08/07/2025

A huge thank you to those of you who came to Nottingham! Families, friends, clinicians, researchers, volunteers and all involved behind the scenes thank you! Keep your eyes peeled for official photographs and updates on the next information day and socials. See you there!

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Alport UK @alportuk.bsky.social · 07/07/2025

What is RaDaR? Are you registered? RaDaR tracks data on 1200+ Alport patients in the UK to boost kidney research. Join to improve Alport diagnosis & treatments! Register via your consultant! More info: www.ukkidney.org/rare-renal/a... #AlportSyndrome #RaDaR

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Reposted by Alport UK

Dan Jagger @auditorynerves.bsky.social · 05/07/2025

An exciting day ahead at the @alportuk.bsky.social Alport Syndrome patient day in Nottingham. Here to learn from people how this kidney/ear/eye syndrome affects them & their families. 🧪🫘👂🏼👁️🧬

Around 100 people seated in a circle, 3 rows deep, introducing themselves & outlining what they're hoping to learn today.

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Alport UK @alportuk.bsky.social · 05/07/2025

This afternoon @lornamilne.bsky.social shared research on pregnancy in Alport Syndrome at Alport UK Nottingham Information Day

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Alport UK @alportuk.bsky.social · 05/07/2025

Nottingham Alport Information day is underway, with our teens talking to Dan Jagger and Martin Christian about hearing and how to manage Alport Syndrome

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Alport UK @alportuk.bsky.social · 04/07/2025

Last day today! Submit an abstract for The 2025 International workshop on Alport Syndrome, Beijing, China, 5-7 September 2025 Deadline 4 July Submit here: shorturl.at/RfhMV If you haven’t yet registered for the workshop,  shorturl.at/v8VbB

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Alport UK @alportuk.bsky.social · 02/07/2025

3 days left to register! Submit an abstract for The 2025 International workshop on Alport Syndrome, Beijing, China, 5-7 September 2025 Deadline 4 July Submit here: shorturl.at/RfhMV If you haven’t yet registered for the workshop,  shorturl.at/v8VbB

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Alport UK @alportuk.bsky.social · 01/07/2025

Are you running the #GreatNorthRun for Alport UK? Today is the start of the #GreatDonationDrive Share your fundraising page far and wide. You’re doing something amazing, let’s shout about it! #alportuk #GreatNorthRun #fundraising #running

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Alport UK @alportuk.bsky.social · 30/06/2025

Closing date this Friday! Submit an abstract for The 2025 International workshop on Alport Syndrome, Beijing, China, 5-7 September 2025 Deadline 4 July Submit here: shorturl.at/RfhMV If you haven’t yet registered for the workshop,  shorturl.at/v8VbB

shorturl.at

Registration — The 2025 International Workshop on Alport Syndrome - Beijing

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Alport UK @alportuk.bsky.social · 26/06/2025

Researching Alport Syndrome? Submit an abstract for The 2025 International workshop on Alport Syndrome, Beijing, China, 5-7 September 2025 Deadline 4 July Submit here: shorturl.at/RfhMV If you haven’t yet registered for the workshop,  shorturl.at/v8VbB

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Alport UK @alportuk.bsky.social · 23/06/2025

Are you researching Alport Syndrome? Submit an abstract by 4 July to present your research at The 2025 International Workshop on Alport Syndrome, 5-7 September 2025, Beijing, China. Submit an extract here: shorturl.at/QjZ5v Deadline: 4 July

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Alport UK @alportuk.bsky.social · 06/06/2025

Huge thanks to all our amazing volunteers at Alport UK! Your support makes a difference in the lives of those with Alport syndrome. Want to join us? Email info@alportuk.org 💙 #VolunteerWeek #AlportUK #ThankYou #ManyHands #TogetherWeCan

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Alport UK @alportuk.bsky.social · 04/06/2025

🌈 Alport UK celebrates #PrideMonth! 🌈 Everyone with Alport Syndrome deserves to be recognized for who they are, whether LGBTQIA+ or an ally. Let's build a world where everyone feels seen & supported! 💖 #InclusiveCommunity #KidneyPride #RareAndProud #AlportSyndrome

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Alport UK @alportuk.bsky.social · 26/05/2025

Congratulations to all, a phenomenal achievement for the kidney community and all those living with kidney disease. The future is already looking brighter.

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Alport UK @alportuk.bsky.social · 14/05/2025

You are not alone, at Alport UK we endeavour to offer support, comfort and care throughout your journey and believe that everyone living with Alport Syndrome should feel safe, included and part of a community. Please email info@alportuk.org if you wish to speak to one of us.

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Alport UK @alportuk.bsky.social · 13/05/2025

Thank you to Florence Nightingale for changing the path for a brighter future for nursing and to all our nurses who help create a brighter future for people living with Alport Syndrome. #florencenightingale #renalnurses #dialysisnurses #transplantnurses #changes #alportsyndrome

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Alport UK @alportuk.bsky.social · 07/05/2025

Registration is open now! Join us for, The 2025 International workshop on Alport Syndrome, in Beijing, China. 4-7 September (4 September patient day) Secure your spot now and be part of making a brighter future for people living with Alport Syndrome. tinyurl.com/5674vckz

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Reposted by Alport UK

Lorna Milne @lornamilne.bsky.social · 05/05/2025

I RAN A MARATHON 🥹 (faster than I passed my viva 🌚) would love to make it to £1000 for @alportuk.bsky.social ➡️ www.justgiving.com/page/lorna-m... thank you to everyone who's donated!! 🫶🏼

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Alport UK @alportuk.bsky.social · 02/05/2025

Nomination are now open! Follow the link below and nominate Alport UK to receive £5000 - It only take a minute and can make a huge difference! bit.ly/42Rm4Cl

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Alport UK @alportuk.bsky.social · 28/04/2025

💡 Want to fundraise for Alport UK? Check out these fun ideas! 🎉 - Bake sale 🍰 - Sponsored walk 👟 - Craft & create 🎨 - Quiz night 🎤 - Coffee morning ☕️ Every penny helps families with Alport syndrome! 💙 Message us! #FundraiseForAlport #MakeNoiseForAlport #AlportUK #FundraisingIdeas

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Alport UK @alportuk.bsky.social · 25/04/2025

#FoodieFriday 🌟 Check out this kidney-friendly recipe from Kidney Kitchen! 😋 Eating healthy can be flavourful. What's your go-to kidney-friendly meal? Share below! #KidneyKitchen #AlportUK #HealthyLiving

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Alport UK @alportuk.bsky.social · 22/04/2025

📢 Meet Lorna, an Alport Syndrome researcher & running warrior! 🏃‍♀️ She's tackling the Milton Keynes Marathon to fundraise for Alport UK. 💜 Support her mission: shorturl.at/TRqTx #AlportUK #MarathonForACause #RunForResearch #TeamLorna

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Alport UK @alportuk.bsky.social · 20/04/2025

Happy Easter to our amazing community! 🐣🌷 Wishing you a joyful day filled with love and happiness. From all of us at Alport UK! #Easter #Community #AlportUK

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Alport UK @alportuk.bsky.social · 18/04/2025

💜 Remembering Tim McLean 💜 We are saddened by the passing of our trustee and Alport advocate, Tim, on March 31, 2025. A cherished member of Alport UK since 2019, his kindness and insight impacted countless individuals. Please feel free to share your memories. 💛 #InMemory

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Alport UK @alportuk.bsky.social · 16/04/2025

🐣✨ Try these kidney-friendly chocolate & nut shortbread cookies this Easter! 🍪💛 A sweet treat that's perfect for sharing! 🐰🌸 👩‍🍳 Full recipe: shorturl.at/ctBog Let us know if you bake them! 🧡 #AlportUK #KidneyFriendly #EasterTreats #RenalRecipes #KidneyHealth #ChocolateAndNutShortbread

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Alport UK @alportuk.bsky.social · 09/04/2025

📢 National Donate Life Month – Share Your Wishes! 💙 Have you registered as an organ donor? Even more importantly, have you shared your wishes with your family and friends? 💚 ✅ Register now: www.organdonation.nhs.uk/register-you... 💬 Start the conversation and make your wishes known!

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Alport UK @alportuk.bsky.social · 02/04/2025

We’re proud to be taking part in the Rare Renal Disease Roundtable, hosted by Public Policy Projects (PPP). @kidneyresearchuk.org @kidneycareuk.bsky.social @pkdfoundation.bsky.social

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Reposted by Alport UK

Moumita Barua @moumitabarua.bsky.social · 31/03/2025

Congratulations to Professor Kai at #KumamotoUniversity for bringing together the #AlportSyndrome community in Japan to advance efforts in awareness, early diagnosis and therapeutic development. I was honoured to be a small part of it.

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Alport UK @alportuk.bsky.social · 25/03/2025

Early Diagnosis Matters Dan Jagger’s research shows that detecting hearing loss early helps prevent lasting damage. His team is improving diagnostic tools so patients get support sooner. #HearingHealth #EarlyDiagnosis #AlportSyndrome #AlportUK @auditorynerves.bsky.social

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Alport UK @alportuk.bsky.social · 24/03/2025

Big news in hearing research! Dan Jagger has been awarded a grant for his research into hearing loss in Alport Syndrome. Shaped by real patient experiences, his work aims to improve understanding and prevention. Stay tuned for updates! #HearingResearch #AlportSyndrome #AlportUK

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Reposted by Alport UK

Rachel Lennon @rachellennon.bsky.social · 20/03/2025

Having a fabulous Bluesky day in Japan! Trip to Minamata with team #Alport & family @moumitabarua.bsky.social @jeffminerphd.bsky.social @alportuk.bsky.social

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Reposted by Alport UK

CT Rare Advocate @rarectadvocate.com · 18/03/2025

Alport Syndrome: A genetic disorder causing progressive kidney disease, hearing loss, and eye abnormalities due to type IV collagen mutations. March is #alportsyndrome awareness month. alportsyndrome.org @alportuk.bsky.social You may be rare, but you are not alone! #rareDisease #rareDiseaseAwareness

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