
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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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…
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London Information Day – 4 July 2026

Please use the form below to register to the London Information Day on 4 July 2026.