Alport UK

Alport UK is a patient-led organisation dedicated to empowering people living with Alport Syndrome to enjoy the best possible quality of life.

[Alport UK @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 https://t.co/Qc1PeWh1zZ

[Alport UK @alportuk]

Please encourage those living with Alport to join the Alport Easter Social on 21 March 2026: register https://t.co/I4uNvtyi4P. Here is a reminder of the fun activities the children did in Nottingham, whilst the parents had time to catch up

[Alport UK @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 https://t.co/Qc1PeWh1zZ

[Alport UK @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 https://t.co/Qc1PeWh1zZ

[Alport UK @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!

[email protected] or DM now!

[Alport UK @alportuk]

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

#transplantgames #alportuk #germany #worldtransplantgames

[Alport UK @alportuk]

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]

Join Alport Warriors!
A supportive FB group for those living with Alport Syndrome.
https://t.co/CxeOAcR8dV
Because no one should face this alone.
#AlportWarriors #AlportSyndrome #RareDiseaseCommunity #SupportNetwork #AlportUK

[Alport UK @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

[Alport UK @alportuk]

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]

Engagement Managers wanted!

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

#alpotuk #volunteer #engagement

[Alport UK @alportuk]

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]

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]

A huge thank you to everyone who joined us in Nottingham!
Families, friends, clinicians, researchers, and volunteers – we appreciate you all!

Stay tuned for photos & updates on our next info day and socials.

See you there!

[Alport UK @alportuk]

What is RaDaR?

Are you registered?

🧵find out more in comments.

More info: https://t.co/cJHdm6dhEf

#AlportSyndrome #RaDaR

[Alport UK @alportuk]

This afternoon @lornakmilne shared research on pregnancy in Alport Syndrome at Alport UK Nottingham Information Day

[Alport UK @alportuk]

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

[Kidney Research UK @Kidney_Research]

Thank you to everyone who organised and attended the @alportuk Research Hub Symposium. We had a fantastic day hearing about the vital research that is happening in Alport syndrome.

@lornakmilne, @DannyGale_, Professor Dan Jagger, @RLWczyk and @neilturn

[Alport UK @alportuk]

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: https://t.co/MLHRnyE1Zx

If you haven’t yet registered for the workshop, 
https://t.co/Cr2S0r0rKT

[Lorna Milne @lornakmilne]

Talk #2 of the week at the Alport Hub Symposium! Thank you to the organisers for the invite to talk about our project applying SIMS to important clinical questions including proteinuria & pregnancy! Excited for the @alportuk patient day later in the week!