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Our next online workshop is on Wednesday 7 July at 7pm BST. Email research@alport.info for Zoom link.  Find out about some exciting work with an Alport dog colony and gene editing plus Autosomal Dominant Alport Syndrome (ADAS). Mary Nabity from Texas A&M University and her team will present an overview of Alport syndrome in dogs, and of the…

If you missed Tuesday’s workshop on the research being done on Alports in China by Professor Jie Ding and her colleagues Dr Yanqin Zhang and Dr Fang Wang from Peking University First Hospital, you can now watch it on our YouTube channel here:

Interested in sharing/taking on the role of Alport Online Workshop Manager and working with the Alport UK team – a brighter future for those living with Alport Syndrome? 6-8 hours a week, working hours flexible, home-based with technology supplied, if necessary. Flexibility, methodical and reliability required. If interested, please email Susie info@alportuk.org or call 01793 847264 The global…

Is Alport syndrome more common that historically thought? Join our next online workshop and hear about the research of Assistant Professor Moumita Barua and Vanessa Williams at the University of Toronto. Working with genetics databases such as those from UK Biobank and deCODE in Iceland, Moumita Barua’s genetics studies have identified that Alport syndrome may…

Our next Alport online workshop on Transplantation TONIGHT Wed 27 Jan at 7pm GMT gives Alport patients who are on the kidney transplant journey the opportunity to hear about the experience of a recent young transplant patient.  Email research@alport.info for Zoom link to the meeting. Supported by clinicians and other Alport patients take this chance to ask…

Great to read that some of our UK transplanted patients, like Paul Matthews, are now vaccinated. You may be aware solid organ transplant recipients and now also adults on dialysis or with chronic kidney disease (stage 5) are eligible for vaccines. We have one of our trustees – Colin Baigent (an Alport and transplant patient…

A personal invitation from Aura Zealey-Smith and Patrick Walker to join an informal Christmas Drop-In on Tuesday 1 December 7pm-8pm. Email here us for the Zoom link.

If you have Alport Syndrome and want the latest advice on COVID-19, please either email us info@alportuk.org or join our closed Facebook page Alport Warriors

The 2021 International workshop on Alport Syndrome If you would like to participate in or sponsor the next workshop, please email Susie Gear at research@alport.info. We particularly encourage the following groups to participate: young people with Alport Syndrome or early career researchers. Funding is available to help with part-funding registration, travel and accommodation. We encourage all…

If you have Alport Syndrome and want the latest advice on COVID-19, please either email us info@alportuk.org or join our closed Facebook page Alport Warriors

19 August 2021, Beijing, China Inviting young people with Alport Syndrome: If you would like to participate and represent your country’s patient organisation, email us research@alport.info The 2021 International workshop on Alport Syndrome If you would like to participate in or sponsor the next workshop, please email Susie Gear at research@alport.info. We particularly encourage the…

Congratulations to Sam who cycled 3,574 miles round Europe raising £17,083.95 for Alport UK and happily arrived back safely from lockdown in Albania. Read More Sams Story I was diagnosed with Alport Syndrome when I was eighteen months old. It’s a rare genetic kidney disease that causes hearing loss, eye abnormalities and kidney failure. Throughout my…

The 2021 International workshop on Alport Syndrome If you would like to participate in or sponsor the next workshop, please email Susie Gear at research@alport.info. We particularly encourage the following groups to participate: young people with Alport Syndrome or early career researchers. Funding is available to help with part-funding registration, travel and accommodation. We encourage…

Please refer to the latest advice at kidneycareuk.org  or your local renal unit. Read more : Kidney Care UK Other useful organisations

If you are newly diagnosed and want to connect with other people living with Alport Syndrome, please apply to join our closed Facebook page Alports Warriors