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

Please encourage those living with Alport to join the Alport Easter Social on 21 March 2026: register form.jotform.com/253103833537.... Here is a reminder of the fun activities the children did in Nottingham, whilst the parents had time to catch up

Alport info day in Nottingham July 2025

In July, we welcomed families living with Alport Syndrome to Nottingham for an Alport Information Day. Living with Alport can be very isolating as you rarely meet anyone with Alport in your area. People seemed to value the connections as children, as parents, as individuals living with Alport Syndrome. We thank the wonderful clinicians and researchers who joined us to share the latest updates on Alport, Alport research etc.

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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

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

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!

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

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

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

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

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

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

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

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!

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!

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

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. 🧪🫘👂🏼👁️🧬

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

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

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

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

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

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

Registration — The 2025 International Workshop on Alport Syndrome - Beijing

Register here for The 2021 online International workshop on Alport Syndrome

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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

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

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

🌈 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

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

ISNkidneycare@theisn.org · last yr.

🌍 History made! For the first time, kidney care is on the global health agenda. #WHA78 adopted a landmark resolution recognizing kidney health in the fight against #NCDs. 👏 Thanks to Guatemala and the global kidney community for making this possible! #KidneyHealthMatters

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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.