alport latest news
London information day 3 July 2026
We’re planning this event to be held in central London in the Summer of 2026. Save the date!
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Want to know about upcoming events? Drop us your email to be added to Mailchimp and never miss out again! Info@alportuk.org
Beijing workshop 4-7 September
Alport UK led the organisation of this amazing international workshop in the heart of Beijing. We started with an information day for Chinese and other visiting patients. There was a large UK contribution to the science, and international collaborations are … Read more
Alport info day Nottingham 5 July 2025
A great day with local host Dr Matt Hall and a great group of patients and families.
RaDaR is 15
About 1200 Alport patients are registered in the Alport cohort in the UK’s really impressive Rare Renal Disease Registry (RaDaR). This event (22 May 2025) was an occasion in London to meet with other rare disease groups, and celebrate the … Read more
Cyprus international workshop 14-16 March 2024
Another outstanding meeting was held at the Royal Hall in Nicosia, local host Prof Constantinos Deltas. The first day was entirely for patients, then an intense schedule of science with short breaks for forays into the city. It was attended … Read more
Alport Info day – Cardiff 22 April 2023
Dr Sian Griffin and colleagues joined the Alport UK Team for a great day.
New Alport drug trial 2023
Eloxx, a pharmaceutical company, is testing a new treatment that they think might help certain people with Alport Syndrome. Alport syndrome is caused by changes (called mutations) in certain genes. Only a very small proportion of gene changes (called ‘nonsense mutations’ … Read more
Alport Research Hub launch
We were thrilled to be in Manchester yesterday celebrating the launch of the Alport Research Hub. Watch the video here. Funded by Stoneygate Trust and Kidney Research UK, the Hub provides the infrastructure and resources to improve the diagnosis and … Read more
Alport Info Day – Newcastle, Sat 1 Oct
Busy, active, lots of questions and discussion, and Prof Sayer collected urine samples for lab analysis! Later walks along the Tyne and more.
PJ Powers concert
Enormous thanks to Alport supporters Jo and Phil who earlier this month organised a private concert by the amazing singer PJ Powers – Thandeka who you might remember sang ‘World in Union’ with Ladysmith Black Mambazo at the 1995 Rugby … Read more
Alport webshop opens!
Psst! We are delighted to be able to announce that you can now buy Alport merchandise from our website – you’ll see the SHOP tab at the top of the page on this website. A massive thank you goes to … Read more
Alport Information Day 31 July 2021
Saturday 31st July from 10am-4pm is an online Alport information day. It’s FREE for patients to join and is open to everyone. Topics: latest clinical trials, nutrition, exercise, and connecting with other patients to share stories plus experts to answer … Read more
Next online workshop: ADAS and gene editing plus an Alport dog colony
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 … Read more
Hearing workshop 23 June
Join a workshop about hearing – learn tips from patient experiences, find out about the latest hearing devices, and participate in the Q&A. This informal workshop takes place on Wednesday 23rd June at 1900h/7pm BST. Email research@alport.info for Zoom details.
Podocyte 2021 Patient Day 31 July
Save the Date! Join us at Podocyte 2021 to hear about the latest research, and for great sessions on nutrition, diet and exercise. Patients are very welcome to attend both the Patient Day on 31st July and the main meeting … Read more
Young adult session 18 March 7pm
Our first informal chat for 18-35 year old Alport patients happened on Zoom and we’re holding monthly get-togethers with the next session on Thursday 18 March at 7pm/1900GMT. It’s a great opportunity to meet with others, share ideas, get involved … Read more
Spotlight on Jie Ding’s Beijing lab
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 … Read more
Volunteer role at Alport UK
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. … Read more
Is Alport syndrome more common than we thought?
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 … Read more