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Alport UK @alportuk.bsky.social · Aug 20

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Want to know about upcoming events?

Drop us your email to be added to Mailchimp and never miss out again!

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Alport UK @alportuk.bsky.social · Aug 18

Goodluck Sam, Adam and all taking part in the World Transplant Games!

#transplantgames #alportuk #germany #worldtransplantgames

Alport UK @alportuk.bsky.social · Aug 7

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

Alport UK @alportuk.bsky.social · Jul 28

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

Alport UK @alportuk.bsky.social · Jul 23

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

Alport UK @alportuk.bsky.social · Jul 21

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

Alport UK @alportuk.bsky.social · Jul 15

Engagement Managers wanted!

Do you enjoy supporting others?
Apply now [email protected]

#alpotuk #volunteer #engagement

Alport UK @alportuk.bsky.social · Jul 11

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 [email protected]

Alport UK @alportuk.bsky.social · Jul 10

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!

Alport UK @alportuk.bsky.social · Jul 8

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!

Alport UK @alportuk.bsky.social · Jul 7

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

Reposted by Alport UK

Dan Jagger @auditorynerves.bsky.social · Jul 5

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 · Jul 5

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 · Jul 5

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

Alport UK @alportuk.bsky.social · Jul 4

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

Alport UK @alportuk.bsky.social · Jul 2

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

Alport UK @alportuk.bsky.social · Jul 1

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 · Jun 30

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

shorturl.at

Alport UK @alportuk.bsky.social · Jun 26

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

Alport UK @alportuk.bsky.social · Jun 23

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

Alport UK @alportuk.bsky.social · Jun 6

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 [email protected] 💙
#VolunteerWeek #AlportUK #ThankYou #ManyHands #TogetherWeCan

Alport UK @alportuk.bsky.social · Jun 4

🌈 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

Alport UK @alportuk.bsky.social · May 26

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 · May 23

🌍 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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Alport UK @alportuk.bsky.social · May 21

shorturl.at/bJHRU

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