We are Alport UK, a patient-led charity supporting people and families living with Alport across the United Kingdom.
We work to improve the lives of everyone living with Alport syndrome in 5 ways:
- Support
- Information
- Research
- Collaboration
- Fundraising
About this website
This website is designed to:
- help you better understand Alport
- connect with the wider Alport community
- stay up to date with the most recent research on Alport
Whether you are a patient, a carer, a clinician, a researcher or a pharmaceutical representative, you will find trusted information, research updates, practical support and opportunities to engage with the Alport community.
If you have any questions, please contact us.
Latest news
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London Information Day – 4 July 2026
More than 80 people joined us at the Westminster Boating Base in London for our Alport Information Day on 4 July 2026 – and what a fantastic day it was! With glorious sunshine outside and a room full of energy inside, the day was packed with expert talks, inspiring personal stories, meaningful conversations and plenty…
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A new perspective on Alport naming
For many years, Alport syndrome was considered a very rare condition affecting a relatively small number of people. A new perspective published in the Journal of the American Society of Nephrology (JASN) challenges this view.
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The 2026 International Workshop on Alport Syndrome
The 2026 International Workshop on Alport Syndrome will take place in Budapest, Hungary, from 5–7 September 2026. Organised by the Alport Syndrome Alliance (ASA) in collaboration with Alport UK, Semmelweis University and ERKNet, the workshop will bring together patients, researchers, clinicians and industry partners from around the world. The event will showcase the latest developments…