Category: latest news
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How one Facebook post changed the life of an Alport family
Sarah was four when she started passing blood in her urine. Nobody could have imagined that it was Alport syndrome. Doctors first suspected another kidney condition. It was only four years later, when genetic testing became available, that Sarah and her family finally had an answer. Sarah had autosomal recessive Alport syndrome caused by changes…
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Kamran’s story: finding answers through early diagnosis
My name is Zahra and today I want to share the story of my son Kamran with you. The beginning of the journey Kamran was six when we first went to A&E. He had been complaining of stomach pain for a while – the kind you hope is just a bug or something that will…
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The importance of early diagnosis
Alport UK Chief Executive Susie Gear has written a new article for Nature Reviews Nephrology, highlighting why earlier diagnosis of rare kidney diseases can make such a difference to people’s lives.
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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
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 2025 International Workshop on Alport Syndrome
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 increasingly powerful. Watch a video-recap of the workshop on YouTube.
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Alport info day Nottingham 5 July 2025
A great day with local host Dr Matt Hall and a great group of patients and families.
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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 tremendous resource that RaDaR has become. We hope for a significant publication from the Alport…
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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 by over 150 scientists from 19 countries, along with patients, families, and representatives from pharmaceutical…
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Alport Info day – Cardiff 22 April 2023
Dr Sian Griffin and colleagues joined the Alport UK Team for a great day.
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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’ which account for approximately 3-5% that cause Alport syndrome) are potentially treatable by this new…
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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 treatment for Alport Syndrome patients. With several years of funding available, Stoneygate’s investment will encourage…
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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.
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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 World Cup in South Africa. The concert raised an amazing £620 for Alport UK for…
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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 Alport Warrior Scott Liddell and his colleague Chris Cousins along with Andrea from Admire PR…
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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 your questions. Register here https://bit.ly/3gzmvcs. The patient day follows a scientific conference, Podocyte 2021, where…
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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 University and her team will present an overview of Alport syndrome in dogs, and of the…
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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.